Good morning lovely people, I am post total thyroidectomy 9 weeks. Am 64 years old biopsy showed no cancer. My latest test results are:
TSH 0. 4 (0.4-5.0)
FREE T4 16 (9-19)p
VIT B12 535 (189-883)
FOLATE 14.4 4.8-19.0)
CALCIUM 2.3 (2.2_2.6)
PHOSPHATE 1.5.(0.80-1.50)
PHOSPHATASE 97 (30-130)
ALBUMIN 39 (35-50)
ADJUSTED CALCIUM 2.3 (2.2-2.6)
GP asks for VitD but labs would not do it. Been told results normal and won't do t3 after thyroidectomy as guidlines say only need TSH. I have been getting joint pain and tiredness lack of concentration. endocrinology said nothing more they can do maybe something else causing it?? Do you think results are good. Thank you for your time.
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After a total thyroidectomy testing FT3 is as important as testing FT4, these are your thyroid hormones and you need to know if you are converting T4 to T3 well enough, so if the NHS wont do it then you can easily do this yourself with a private test. Cheapest is MonitorMyHealth which is an NHS lab at Exeter Hospital who offer a basic thyroid panel to the general public with a fingerprick test:
Remember to do all thyroid tests under the same conditions each time:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Your test results look good, are you Levothyroxine?
Thank you SeasideSusie, Yes I am on 100mcg levothyroxine. I tried to explain to endocrinologist about t4 to t3 conversion but she wasnt having any of it. I will have to get my own my vit d and thyroid testing done. I did have bloods taken at 10am. Nothing to ear or drink. My last levothyroxine was taken the previous morning at 7am so a 24 hour gap.
Can I just say that a fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3.
T4 - synthetic Levothyroxine is a storage hormone and T3 - synthetic Liothyronine is an active hormone :
Your body needs to be able to convert the T4 into T3 and I read T3 is about 4 times more powerful than T4 and most people use about 50 T3 just to function.
No thyroid hormone replacement works well if ferritin, folate, B12 and vitamin D are not maintained at optimal levels and you may need to consider supplementing these core strength vitamins and minerals, indefinately, yourself.
Which ever way round this goes, if on monotherapy with just T4 you have lost your own natural production of T3 that kicks starts the process of metabilism and well being, and in effect been down regulated by approximately 20 % of your overall wellbeing.
After a thyroidectomy or RAI thyroid ablation routinely patients are put on monotherapy with T4 - Levothyroxine and when discharged into primary care, monitored and dosed on TSH blood test results.
It is imperative that you are monitored and dosed on T3 and T4 blood test results with aim being that both these vital thyroid hormones be in the upper quadrants of their ranges, and at an acceptable level to the patient, and health and wellbeing restored.
Liothyronine is available through the NHS and you will need to be assessed for a trial of T3 by an endocrinologist, and Thyroid uk, the charity behind this amazing forum, do hold a list of " friendly, sympathetic endo's " but I think it's becoming increasing difficult to obtain T3 on the NHS.
I think it maybe near impossible to get on the NHS now, but the other alternative is Natural Desiccated Thyroid which contains all the same known thyroid hormones that your thyroid once supported you with namely : T1, T2, T3. T4 and calcitonin.
NDT was used successfully for over 100 years prior to the introduction of the blood tests and ranges introduced alongside Levothyroxine - as the new form of thyroid hormone replacement.
Obviously both options may well be available privately.
I do think it might be a bit soon after surgery to start feeling 100% and am suprised you have resumed work, as you have been through a major operation, and you have lost a major gland, so it will take time to adjust to living without a thyroid.
I'm with Graves Disease and had RAI thyroid ablation back in 2005 and was refused both NDT and T3 on the NHS and for the last few years I have been buying my own thyroid hormone replacement and self medicating.
Dear penny Annie, Thank you for your reply. It's so unfair that so many of you have to self medicate and go down the private route. Before my op they told me it will be much easier to treat when hypo rather than my thyrotoxicosis but I felt better once they put me on carbimazole, but they said was very high suspicious cancer cells best to remove. I'm not sure it was the right choice, as I don't think nhs know what they are doing. Twice I have had telephone appointments from endocrinology stating I'm on the list for total thyroidectomy which I keep telling them I have had done?? So I have not a lot of confidence. I am trying to keep vits in good ranges will need to get vit D tested as I am supplimenting. Then have to get my free t3 tested. But even if I do and its not being converted no one will be willing to help on the NHS. I went back to work after four weeks after TT, find it hard to cope at times as cannot handle pressure and have broken down a couple of times 😔
Yes, I read people are advised a " a month off " should do the trick - but no this is a big operation and a massive adjustment and from what I've read I think you should be looking at another couple months , and if you feel well, ease yourself back in and return on a part time basis.
Is this an option, or can you consider dropping some hours now, to give yourself time to adjust ?
It's so hard if there are financial pressures on you as well as everything else, as it's not conducive to recovery, and then throw the curved ball of Covid into the mix - it doesn't make anyone feel comfortable and positive about anything.
I too was well on the Carbimazole and told at my very first endo appointment I was to have RAI the following year - and there was no discussion, about Graves and why it had happened, and I didn't know enough to question, and simply trusted what I was told was in my best interests.
So we are where we are.
The thyroid is a major gland responsible for full body synchronisation, including your physical, mental, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism, and totally understand and agree with your comments.
I know I'm not as resilient as I once was, and I'm not working or handling pressure, and feel very well !!
The true effects of loosing this major gland are totally underestimated by the medical profession as in the NHS they seem to think T4 is the only medication and if that doesn't work throw some anti depressants into the mix, but whatever you do, don't do the correct blood tests, and find a problem, as we don't want to treat with anything other than Levothyroxine.
I'm sorry if I sound cynical :
So your hyperactivity was through a goitre and not Graves Disease ?
Are you still under endocrinology - can you ask to see a different doctor in this specialisation, who might be more understanding and open to discussing your symptoms, as they are more than likely, probably not " something else " but classic symptoms of low T3 ?
There's a book that has helped me understand better and written by a doctor who has hypothyroidism : Barry Durrant - Peatfield writes " Your Thyroid and How To Keep It Healthy " in an easy to understand manner and along with this excellent forum, and Thyroid uk, I've managed to sort myself out, but it isn't a choice I'd recommend so soon in your recovery.
Dear Penny, I can understand how you feel and don't think you are cynical. I will give it more time and will get my vit s tested and free t3 so see if converting but I wonder if it's possible to get normal conversion with no thyroid or impossible? I am glad you have been able to help yourself to feel well ☺ x
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