Confusion - I need a plan ! All advice welcome

Hi ,

A little help needed . In 2005 I had radio iodine for an overactive thyroid and have been on 100mg levothyroxine ever since.

For the past 12 months I have felt awful , costochondritis symptoms , weight gain , severe lethargy , insomnia and muscle pain and a large neck goitre.

I have just had FNA biopsy and my results are thyroiditis , ultrasound shows multiple nodules and calcification . I am having swallowing issues.

I have managed to get a small amount of information from my GP regarding my blood results as my medication has been reduced to 75mg

this is the information -

Thyroid Function Test - ( JN ) - ok

Serum TSH level 0.064 mU/L 0.34 - 5.60mU/L

I am clueless what to do next , I feel rotten and not well informed . I need to consider my next steps , understand the causes of this change and get better any help would be wonderful .

Thanks in advance

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21 Replies

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  • I have my thyroid gland. I felt awful on levo but well on T3. So, for you without a functioning thyroid gland due to RAI, the very least they could do is give you a T4/T3 combination to try to get you back to good health.

    We have to read, ask questions, and learn how to take care of our thyroid health. That means the test has to be the very earliest possible, fasting (we can drink water) and if taking thyroid hormone replacements allow a 24 hour gap between the last dose and the test and take it afterwards. This allows the TSH to be at its highest as they are apt to adjust meds according to the TSH and not our symptoms (they don't know any in the first place).

    Ask GP to test B12, Vit D, iron, ferritin and folate as deficiencies can also give symptoms.

    Did you take levo before your blood test? If so, ask for a new one as your results are skewed and follow procedure above.

  • Thank you for your reply shaws . I took my Levo about 8 hours before the test without fasting . My surgery has never specified fasting ever before my tests . I actually found out myself it is best to wait an hour after taking your morning dose before eating , my GP did not know this .

    I have asked why I have goitre after radio iodine treatment and the answer was " don't know really the thyroid can do funny things " my neck looks like a bull frog its not very funny to me !!

    GP said I am now Hyperthyroid , I am just so confused !

    I have a GP appointment for next Thursday and will ask if I can have these tests done

  • You can't be hyperthyroid if you don't have a thyroid! What a clown! He thinks, though, that you're over-medicated because your TSH was low. He has no idea that the TSH is totally irrelevant once you are on thyroid hormone replacement, and he should be tested - and dosing by - the FT4.

    Tell your doctor that a low TSH does not automatically mean that you are over-medicated (or 'hyper', in baby language). You actually need to see your FT3 to know that - but, failing that, at least the FT4. He wouldn't look at his fuel gauge to see if he needed oil in his motor, would he! Your FT3 could be very low, but he wouldn't know that just looking at the TSH.

  • Change your doctor.

  • Thanks for your reply shaws.

    I have just got myself a new GP and he is really good and has ordered the tests and scans I just had . I am seeing him on Thursday and I am going to ask him for new bloodwork and follow the fasting procedure . Up until this point I have been in the wilderness and have so much to piece together .

  • It is a big learning curve - isn't it. As said before on the forum we know than many doctors, very many doctors it would appear don't appear to know much about dysfunctions of the thyroid gland so am glad yours listens to you. Sometimes when they order certain ones the lab may not do some of them.

  • Hello GreyGoose ,

    Thank you for your reply . I hope you don't mind if I ask you some questions which are probably very silly but I genuinely do not know the answers to them.

    1 . If I have no thyroid how do I have a goitre / nodules

    2. How do you have thyroiditis without a thyroid

    3 is it possible my thyroid has grown back

    Really sorry if this sounds stupid but my doctor does not seem to know the answer either .

    thanks in advance

  • 3. Yes, it can to a certain extent, but I don't think it could grow back enough to make enough hormone to make you well.

    2. If your thyroid has grown back a bit, it could very well be inflammed and that would

    1. cause the goitre. But, I don't see how you could have nodules. Who said you had nodules?

  • Hello Greygoose , thanks for replying.

    I had an ultrasound and a fine needle biopsy around three weeks ago of my goitre/neck swelling . I got the results on Wednesday that I had a thy2 benign nodule caused by thyroiditis .

    I was told I had multiple nodules especially on the right side

    I hope you can understand my confusion , I am quite health savvy but nothing makes sense for me at the moment .

    My radio iodine treatment was end of 2005 .

    My doctors appointment is next Thursday , I really want to get to the bottom of what exactly is happening .

  • Yes, I must confess, I'm confused myself! Are they sure they gave you YOUR results, and no somebody else's? Mistakes do happen. Happened to me.

  • Its strange isn't it . I know they took a biopsy from me at the ultrasound and the printout from my last blood tests have my name on them but I am full of doubt about everything which is upsetting because I feel so unwell and the confusion does not help.

    This is why I am trying to educate myself as much as possible before my next appointment.

    Radio Iodine was done at Christies , Manchester UK after initial Hyperthyroidism in 2005.

    100mg of Levo with bloods tested every year since .

    Had a stranger point out my neck swelling late Feb and my blood results I posted are from mid march .

    At my ultrasound I had biopsy and the doctor spoke of u2 and u3 but did not explain what that meant and calcification . I tried remember as much of his conversation with the nurse as possible .

    I got the thy2 , thyroiditis result this week , I was had a CT scan which I do not have the results for , I presumed it was to check for cancer.

    It makes NO sense all this , its highly plausible there could be a results error somewhere but not sure where .

    thanks for taking the time to reply , I really appreciate it .

  • Your more than welcome. I just wish I could say something a little more positive. But, I really don't understand, either.

  • Hey , you have been really helpful just by giving me time to talk though my worries !

  • Good. :)

  • Hi FrogieBear. greygoose wont get that because you've replied to yourself. You need to click on the green box in someones reply to reply to them. However to save you repeating yourself, this should contact her, greygoose

  • Thank you crabapple. I am fairly new to these boards and getting to grips with them slowly .

    Cheers for the help !

  • Snap, I had RAI at end of 2005, but that was following a total thyroidectomy where my throid gland was trying its best to kill me. I haven't a clue whether it was hypO or hyPER, all I know is that it was absolutely awful. This sounds somewhat like you are experiencing.

    The surgery put me back into tip top condition.......for a short while, and then had to start on levo which was the WRONG medication for me, just as it is for the majority of us who no longer have a working thyroid gland. I now take NDT and will NEVER take levo again.

    I suspect the only way to get rid of your problems is surgery, but this is a dangerous choice as the outcome can be disastrous in the hands of an unskilled surgeon. You need to discuss this option with doctors.

  • Thanks for your reply Panda321 , I am really sorry you have been so unwell and an happy you have found a medication that works for you . I was only and perhaps rather stupidly led to believe thyroxine is the only option after radio-iodine .. Knowledge is power !

    There has been talk of surgery but I was told because I have previously had RAI my thyroid will be in a " right mess " and my voice could be at risk .

    I suppose the CT scan will show just how much thyroid I now have or perhaps that I am a radiation resistant superhero - I do live pretty close to a nuclear power station.

    Joking aside I am reaching the point where I feel I cannot go on , so exhausted but wake all the time . I do feel like hyper and hypo all jumbled into one !!

  • Those who have Hashimoto disease are undoubtedly worse off than me. Whatever has afflicted me in the past lasted a relatively short time to what these unfortunate souls have to put up with.

    Strange that you mention a nuclear power station - Sellafield perhaps?

    My belief is that the fallout from there into the air and especially the sea, from the 1950's/60's when they were involved with nuclear weapons, has caused all my problems; just no way of proving it to any doctor, and, most unfortunately, not to a court of law.

    It is certain that your ability to speak may be affected if you undergo surgery. I was extremely lucky that the surgeon at Aintree hospital was sufficiently skilled to avoid causing damage. Surgery will be dangerous, there are other more serious concerns when a surgeon is poking around in your neck, not least ending up in the morgue. But if you are going to have to endure a life that's not worth living without the surgery, then you have serious decisions to make.

    It is also well worth while considering buying some NDT and giving that a go as levo is, in most cases, completely the wrong medication when you no longer have a working thyroid gland.

  • Yes it is Sellafield Panda321 ,

    My father worked there when I was conceived :( . I also have other very strange health issues including a bleeding disorder and multiple Arterio-Venous malformations which are benign tumours within my veins and the grow all over my body . I also had a hysterectomy age 19 as my womb as malformed . I also have multiple polyps all in my throat which appear and disappear on whim .. plus all the thyroid strangeness .

    Like you said nothing can be proved but it makes you think .

    Will look into NDT , thanks again :)

  • Unlike you, I have no direct connection with Sellafield but live on the coast much further south. I spent a lot of hours on the local beach fishing in the 60's and 70's which involved catching 60 or 70 lugworms for bait each weekend. These lugworms are stuffed full of iodine which will have absorbed nuclear materials from the sand and mud; lugworms ingest sand, sift out the nutrients in their bodies and expel the residue out the back end - that is the reason for worm casts.

    At end of weekend fishing your hands are yellow from the iodine and you eat the catch over the following week, the same fish that eat the lugworms! On top of that I also consumed very large quantities of local shrimps which also live upon the contaminated nutrients in these waters.

    The time scale is correct for the symptoms to occur as it took till 1989 for the first goitre to develop fully. On top of this I had kidney cancer 5 years ago which could very easily have been similarly caused.

    As the type of fishing involved here needs a great deal of energy and going out for several hours in the middle of the night, I can no longer do it. For anybody who still has good health my advice would be to never eat any products from the Irish Sea.

    My best wishes to you.

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