Total thyroidectomy for GD. Thyroxine stopped. Consultant says TSH too low. Carbimazole prescribed. Has anyone any experience of this?

Over 2 years ago I was diagnosed with Graves Disease. Following two unsuccessful rounds of RAI, I had a TT last August. Afterwards I was started on 125mg of Levothyroxine, but blood test and symptoms suggested that was too high. The dose was dropped to 100mg and then halved and halved again over next 3 months and by early this year medication was stopped completely. Symptomatically I am now hypothyroid but my consultant is insisting that the blood results show the TSH as undetectable and says biochemically I am hyperthyroid and what I really need is more RAI. I objected -because it doesn't make any sense to me, so he has prescribed 10mg of Carbimazole for 2 months, to give me time to see things his way and agree to RAI. The surgeon who did the TT was very pleased with the outcome and certainly didn't anticipate any problems or mention any 'remnants'. I am so confused. I'm sure if I didn't spend all of my time in a heap on the floor in tears; or firing off like a rocket at the slightest thing, I could bring some logic to all this - but I don't seem to have any decent thought processes left! Has anyone else had a similar experience or does anyone have any idea what is actually happening? I would be really grateful for any help or information. Thank you.

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  • No, I have not encountered this despite spending several years on several forums. How does your consultant profess to know that the pituary gland is working properly and can make tsh? Has he tested? I would be asking for a second opinion,you are absolutely correct to go with your gut instinct. If you can't get another consultant,write to the surgeon....

    Tsh alone isn't enough to know what your thyroid hormone status is, you need tests for free t3 and free t4. If your doctor is not helping, you can get the tests done privately, dealing direct with the lab for less than £100.

    Xx. G

  • Thank you so much for your reply. My instinct was to seek a second opinion and your idea of going back to the surgeon is a great one. I will let you know how I get on. Xx

  • Oh dear. :( Your consultant doesn't seem to understand how Graves works. You still have Graves even though you no longer have a thyroid.

    Graves’ disease patients who have had radioactive iodine treatment, a thyroidectomy or who take anti-thyroid drugs should not be dosed by TSH. Graves’ is caused by TSH Receptor antibodies, and TSH levels can stay suppressed (near zero) for months or longer, even after treatment brings thyroid hormone levels down into the normal range or even below normal.

    I suppose your consultant didn't actually bother testing your FT3 or FT4 levels? TSH isn't telling him anything!

  • Thank you for your reply. I'm thinking I need a whole new set of tests ......... And probably even a new Consultant ........... Why on earth wouldn't a Consultant know this stuff?

  • louise.warvill@thyroiduk.org has a list of sympathetic doctors, one of whom may be near you.

  • Deff get a second opinion, or even better,,a decent first opinion. The only way I got any joy and sense in the beginning was to go private and seek out a specialist who knew what he was talking about,, plus yes, the private blood test route is good and relatively inexpensive and will help the specialist if you get

    that done first.. thyroid UK site has lots of info on where to obtain tests,, I use blue horizon,, and have had my tsh, free t4 and ft3 tested at spire hospital via them for about 90 quid ,,

  • Thank you, your opening line raised a real chuckle - made me realise I haven't actually laughed in a while. Can I PM you? I would really like to know who you went to see - I'm guessing you are in Essex, I'm only Kent -and quite frankly would travel to another planet to get the right help with this. Thank you.

  • Your welcome to pm,, I'll let you know of a guy who's on the thyroid UK list for Essex,, plus couple people here see him regularly, wouldn't like to personally recommend just cos I've not seen him,, you could also contact Louise at thyroid UK for the endo / doc list,, might be one nearer you. Unless you fancy trip to Brentwood.

  • Hi,

    Have you tried looking at Iodine and desiccated thyroid? There is loads of information on-line.

  • If someone has no thyroid, wouldn't the iodine be superfluous?

  • Iodine is required in every cell of the body. It is essential. Have you read the book "Iodine, Why you Need it, Why you Can't Live Without it"? You can do an Iodine Loading Test to see what your level of Iodine is.

  • I have Graves disease and had a total thyroidectomy in June 2012. My TSH is always 0.01 or less. I am treated on the basis of my Free T3 result. Free T3 is the active hormone. I do not feel well unless my FT3 is over 5. I was seriously underactive on 100 mcg of thyroxine and the surgeon's registrar suggrsted I reduce it based on TSH - I refused. Currently I am taking 112.5 thyroxine each day and 30 mcg of liothyronine(split in 3 doses).In your shoes I would not take the carbimazole. The following link might be helpful. If it doesn't work copy and paste into your browser.

    hotthyroidology.com/editori...

    Good luck Sandra

  • Thank you. It looks like I have a lot of reading to do, but the thing that perplexes me the most is how can my body be producing any thyroxine if I have no thyroid gland? I haven't taken any Levothyroxine since January and I'm guessing it must be producing some somehow.

  • I don't see how it could be - I think you need to see a competent doctor very soon. I functioned after a fashion for 6 weeks or so with no hormone replacement after a TT, and your description of your emotional state struck a chord with me. I don't know why your TSH is suppressed, and agree with the others that it's irrelevant. Taking carbimazole in your condition doesn't make any sense to me. I suspect that you're still using up residual T4, and when that's used up things will take a turn for the worse. Please get your free T3 and T4 tested - I expect when they get the results, your doctor will immediately change their tune. Good luck!

  • Thank you, yes I will. I have been thinking back to when I felt really good - it was October - we went to a family christening and it was the first time some members had seen me since before surgery. I had loads of comments about how much better I looked, even the scar was no big deal - I called it my second smile and I also felt much better than I had since diagnosis. My daughter still has a photo of us from the day on her Facebook profile (now I can't see the keyboard for tears)and every time I see it, I wish I was that person again, but it's not been until now that it's even occurred to me to think about what dose of Levothyroxine I was on at the time. It was 100mcg. I was perhaps leaning towards the 'buzzy' side but I was soooooooo grateful to be feeling better than I had since way before diagnosis -it was genuinely exciting. I now recognise what you refer to as 'functioning after a fashion' and in fact on many levels I'm actually not functioning at all.

  • It is likely that after total thyroidectomy your body is unable to produce any of the hormone that it needs. This is why you are feeling so unwell. You need some levothyroxine urgently. Get that second opinion urgently. It might be worth trying your GP TODAY for quickness - As already recommended ask for free T4 and free T3 blood test. If not get the blue horizon blood tests it is well worth the expense. The body can go a while without thyroxine, but not forever. I don't want to alarm you, but your instincts are right - you need that replacement hormone NOW. Sandra x

  • I have heard of patients whose TSH is undetectable and doctors want to treat them for hyperthyroidism and yet they are actually hypothyroid. Have they checked your FT4 and FT3 levels?

    I hope you get this sorted soon.

  • Square peg

    I have sent you a private message

    Your endo should be reported to GMC for malpractice and total ignorance

  • Quite. What the Sam Hill is her endo playing at?

  • You sound a little like me. I had my thyroid removed in 2010 and was told by an Endo in 2012 that my tsh was too low and that the surgeon had probably left some of my thyroid in and that it was still producing. This person said, I should just stop taking thyroxine and see what happens. Errrmm....... no! That's when I found this site. I started on 150mcg for the first year, 100 mcg for the second year, then I upped myself to 100/125mcg and that's where I am now. My tsh is 0.01 and has not altered much. I was at the hospital today and not a word about the tsh.

    Whoever is treating you needs to go back to school :-( Sorry!

  • I had RAI and was being tested every three weeks to track my dropping levels. A year later I found out that one of those tests was actually a genetic test. Many symptoms that I thought were related to my thyroid actually were not.....they were caused by an inherited condition called MTHFR. I don't like having MTHFR, but it is empowering to know what is fueling certain symptoms and conditions. Most MD's were not taught this in medical school and very few know anything about it. MTHFR is where Celiac was twenty years ago. You can do genetic testing inexpensively through online providers now and know in 5-6 weeks WHY you have the issues that you do.

  • Hi I was nearly the same. The endo wanted to give my thyroxin and my cardiologist said not. So i went to another endo and they help out a bit. The advice was start very low i.e. on 25 MCR then work your way up. As you were hyperthyroid you may have had a lot of your own bodies thyroxine in there still but as you have no thyroid now it doesn't take too long to get this out of your system. You cannot live on no thyroxin even if you TSH is high.My advice is go to your GP and ask for a 2nd opinion. Now there is an art to second opinions, even if its at a different hospital. You want somebody that went to a different medical school or trained at different hospitals. Why ,!! because they are all mates and they won't give any other advice that will upset each other. If you can afford it why not go private , the consultation will be around 15o GBp and the bloods about 80 GBP. I know its expensive but it will put you out of not knowing. I hope that helps.

    JOhn C