Hey guys, so I had a total thyroidectomy due to thyroid cancer. The doctors put me on 100mg a day. That was almost 1 year ago. (Aug 22,2018) I’ve only had my levels checked 3x maybe (I moved & had to find new doctors) but none of them changed my meds. I am now suffering big time. My ths was low and my t3 & t4 we’re high. The said in the hospital I have hyperthyroidism. Idk how any of this works. My docs never explained any of this to me. Right now I’m trembling, my chest is tight, my heart is racing, and everything is stiff. I initially went to hospital bc I thought I was having a heart attack. I won’t be able to get into my doc for about a week. Idk what to do. I’m so uncomfortable and my anxiety is thru the roof. How long will it take for me to feel better and should I drop taking the meds?
Hyperthyroidism from medication after total thy... - Thyroid UK
Hyperthyroidism from medication after total thyroidectomy
Hi Krneville,
First, I am so sorry to hear how ill you feel and how frightened you are. It is understandable.
In order to help you, we need to see your blood work results: TSH, T3 and T4 plus thyroid antibody tests . Without these, our forum members can’t help you. Please post your latest if you have them.
You cannot be “hyperthyroid” without a thyroid gland. However, you can be over medicated , which produces symptoms of hyperthyroid.
You cannot stop taking your thyroid medicine abruptly - but your dosage clearly needs changing. When you went to the hospital what did they tell you?
If you feel so ill, please go to hospital -again and do not wait - and see if they can help you. They should be able to tell you how to adjust your medication. Call the emergency if necessary.
Wishing you well and I hope feel better soon . Please update and let us know how you are doing.
All they really said was that I had anxiety and hyperthyroidism. That’s what was printed on my discharge papers. They didn’t even test all that. They just tested the tsh. Which was 0.166. When I say I know nothing, I really know nothing. I didn’t even know that there were diff hormones like t3 & t4 until they told me in the hospital. I assumed they were high bc that’s what they implied but looking at my results now, I don’t see it on there. Idk anything and idk what I need to know either or what I should be asking. Thank you so much for the response and sorry if I sound like a moron. I’ve been so uncomfortable and out of it.
You do not sound like a moron! You sound like a person who is frightened and received terrible information at the hospital. Please do not berate yourself because you received bad care from careless physicians! You deserve better!
Do not let anyone make you feel badly for seeking medical attention. And if you still feel so ill, do not wait to seek medical attention. Don’t wait for the doctors appointment.
I’m hoping that one of our members who is more expert than me will answer your post about what blood tests to get as well with additional info for you. In the meantime, if you choose not to go to hospital, can you call a friend or family member to stay with you? It might help you.
All the best and sending you a big hug 🤗 .
Thank you so much. Honestly I feel like I’m losing my mind. My husband is home and my 2 year old is still up trying to snuggle me so I think I’ll make it through the night at least. I’m going to walk into my doc tomorrow and demand to be seen bc I cannot live like this. Thank you again
I’m so glad you are not alone at home and you are not alone on this forum. Please update tomorrow on what doc says and keep snuggling with your beautiful 2 year old. I’m sure your husband will give you a big hug too. All the best.
As has been said, you cannot be hyperthyroid if you have no thyroid gland; but when uninformed Drs see a low or suppressed TSH they immediately label it hyperthyroidism, which is wrong on two counts: that it's a physical impossibility to be hyper post-TT, and that the TSH is a pituitary hormone, not a thyroid hormone. You must not dose by TSH alone, but Drs do it all the time! You can certainly be over-medicated, which is when your FT4 and/or especially your FT3 levels are in excess of their respective reference ranges, but you cannot tell that by looking only at the TSH, you have to know your thyroid hormone levels. When you say say your T4 and T3 were high, do you mean your FT4 and FT3 (the 'F' is short for 'free', which means free of their protein carriers and therefore available for the body to use); and do you mean high in their respective ranges, or higher than their ranges? It is the latter which signifies being overmedicated (although you will have your own optimal levels within the ranges, at which you feel most well). You are legally entitled to have copies of your test results and can simply ask at reception for printouts of the most recent ones ordered by your GP; which is the first step in taking control of your health. You can then post them here, with their reference ranges, and folks will give you feedback. Meanwhile if you are worried now, you can phone 111 and speak to a Dr who can advise you. Unless you know for sure that you are over-medicated it would be unhelpful to adjust your Levo at this point, not least because many symptoms overlap between having too much and too little thyroid hormone, and in any case, anxiety in particular, is associated with hypothyroidism. It may very well be the anxiety that is exacerbating or even generating your present symptoms, especially as you've already been checked out at the hospital and discharged, so it's easy to say, but the first thing to do is relax and take it easy - you are unlikely to be at imminent risk from your Levo at what is only a lowish dose for someone post-TT. But as I say, if you think it will help, call 111 and ask to speak to a Dr.
Thank you. After looking at the results they only tested the tsh. My doc can’t see me for a week but I’m gonna just walk in tomorrow. I’m going to ask for the results of everything you mentioned (thank you bc I know nothing about nothing) and when I get those results I’ll post them here. The anxiety is def getting the better of me. I never had a problem before the surgery. Not with my health and not mentally and at this point, I wish I’d never had it removed bc I have been miserable for the last year. Prob do to the lack of knowledge on my oft and the lack of patient care on my docs part. But thank you again. I will be back with the results
Depending what provision your GP practise offers, you should - but may not - be able to set up online access to your health records. Some patients are given only limited access, others are able to ask for more detailed access, so check out tomorrow how you can have this made available. Generally the extended access requires a bit of form filling and two proofs of identify so take them with you and you can get it set up while you are there. Meanwhile, try and remember that it is the hypothyroidism that is likely at the root of your anxiety, and may very well be indicative, along with the other symptoms, of you being undermedicated since your surgery, rather than overmedicated - so get those printouts tomorrow, and you can take it from there, being better informed. . Be prepared though, for possibly having to do what many of us here do, which is having more comprehensive blood testing carried out privately - but that's info for tomorrow. 🙂
I am so sorry you are in this mess. You can go to the Synthroid site and they explain a lot of the things you are asking about. The thing that drives me mad about this is that the medication has the same effects as the disease. The anxiety, the tight chest, all of them are listed in the side effects. I am in the US so our numbers are a bit different. Mayo Clinic is a nice site for info as well. I was on Levothyroxine for nearly 3 months and felt like I was coming unglued. I am on Synthroid now and some thing have calmed down. Wishing you all the best!
Just testing TSH is completely inadequate
Was thyroidectomy done because of thyroid cancer or because of Graves' disease or large goitre?
Low vitamin levels are extremely common on Levothyroxine, especially if dose is too low
Low vitamin levels can result in poor conversion of FT4 to FT3
Both of these can cause anxiety
Have vitamin levels been tested?
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Are you in the UK?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Medichecks currently have an offer on until end of May - 20% off
You are legally entitled to printed copies of your blood test results and ranges. Very important to see exactly what has been tested and what hasn't been tested yet
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
I don't think you can be hyper without a thyroid. You must take meds as you have no thyroid and without them you will die. You could reduce by 25mcg until you feel better. If you previously had Graves, you'll still have the antibodies, but after a TT they tend to affect the eyes. If both your free T4 and free T3 are over range, you may be overmedicated (but that's not a high dose for someone without a thyroid). If just your free T4 is over range, you probably need a high free T4 in order to produce enough T3, so you actually need T3 added to levo. If you took a B vitamin supplement containing biotin in the week before the blood test, or took your levo before the test, or had the test in the afternoon. the results are probably invalid, so I would ask for a retest in a month. make sure to have the test first thing in the morning, fasting and don't take meds until after the test. No biotin in the week before the test. I'd also get them to test b12, folate and ferritin as less than optimal levels of those can produce your symptoms. You should have been tested every 6 weeks.
Thank you everyone for all the knowledge and advice. I’m going to my doc armed with the information I need now!!!
Hello Krneville
Just as a point of reference, a fully functioning working thyroid would be supporting you daily with approximately 100 T4 + 10 T3. It's a rough guide, everybody is different.
I personally believe that if there has been a medical intervention and the thyroid either ablated with RAI or surgically removed both these vital hormones need to be on the patients prescription, for if and when, needed.
Some people get by on T4 - levothyroxine alone, some people at some point in time simple stop converting the T4 to T3 and some people simply need both these essential hormones dosed and monitored independently to bring them into balance and to a level of well being acceptable to the patient, which is generally in the upper quadrants of their relevant ranges with a ratio of around 1/4 : T3 /T4.
The thyroid is a major gland responsible for full body synchronisation including your mental, physical, emotional, psychological and spiritual well being, and living without a thyroid and being totally reliant on thyroid hormone replacement can be challenging.
It is essential that you are monitored on T3 and T4 blood test results and presume your TSH must be kept suppressed because of the cancer risk.
You could be over medicated, but without the exact blood test reads we can only guess and that doesn't help anyone. You can't be hyper, you have no thyroid to activate.
It is also important that your ferritin, folate, B12 and vitamin D are high in their ranges, and not " just in range and ok " since if not optimal these can effect the conversion of T4 to T3.
T4 is a " storage " hormone and a normal, functioning gland, would pull on the T4 throughout the day, and convert it into T3 which is the " active " hormone that the body runs on.
You might like to read a book :-
Your thyroid and How to keep it Healthy by Dr Barry Durrant - Peatfield. This doctor actually has hypothyroidism himself and his book is an interesting take of all things thyroid and the implications of when things go wrong and what the implications are on the rest of your body and what can done to compensate for the body's malfunction or loss.
I am with Graves Disease ( hyper ) but have had RAI thyroid ablation in 2005 and now hypothyroid. I am now self medicating with Natural Desiccated Thyroid as I became very unwell some five years ago, and found no help within the NHS mainstream services.
Total thyroidectomy soon...
15 month after Total Thyroidectomy 
Total thyroidectomy few questions 
Total thyroidectomy, remnants and euthroyx. 
Recurring toxic nodular hyperthyroidism 3 years after hemi thyroidectomy 
