I’m Sally, 47 years old. In February of this year I had my thyroid removed due to over 25 years of suffering from graves’ disease and being on a rollercoaster of hyper and hypo due to meds not being able to stabilise my thyroid.
My thyroid was removed several months ago. I still need calcium supplements, still take propranolol and 100mg of levothyroxine. My last bloods were 1.27. I wasn’t aware to ask about ranges sorry.
I feel no better since my operation, mostly terrible dizziness and nausea but have been told I’m in “normal” range.
I was really glad to have found this site and I am reading many posts to learn what i can.
Could someone suggest which private blood test would be good for me start off my journey towards better health... I’m so tired of feeling “sick” and just want some sort of normal life back.
Thank you for any help.
Sally x
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elsaldo
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For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Graves or Hashimoto’s
Ask GP to test vitamin levels
Obviously just testing TSH is completely inadequate
Most Graves patients when adequately treated will have extremely low TSH....but most important result is always Ft3 followed by Ft4
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Is your dose correct for your weight....according to these guidelines?
Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Thank you for the detailed reply it’s very helpful
According to weight calculation my levo dose should be 105.75 - rounded down is my prescribed 100mg levo.
Before my thyroid was removed I got full thyroid tests...
... so I did enquire why only tsh was tested after thyroidectomy and my Endocrine Nurse said that’s all you get tested when on t4 replacement and said i’m in the normal range now so levo dose is adequate and won’t be changed.
I am prescribed 20mg propranolol twice daily. I am reducing that since last week down to 10mg twice daily.
I am also prescribed:
2mcg alphacalcidol daily
500mg calcichew d3 tabs - 2 tabs four times daily.
I will look at the recommended private blood tests as this will be next step. I will also follow the guidelines for blood tests as I previously did not do that.
Once I know the results hopefully my health issues will become clearer.
Thank you for listening and for offering advice, Sally x
Having lived with Graves Disease for so many years, I'm guessing you know of the Elaine Moore Graves Disease Foundation website and understand that Graves is an autoimmune disease, and as such, is for life, as it's in your blood and your DNA.
I've had to learn of my situation back front, having been diagnosed with Graves in 2003 and treated with RAI thyroid ablation in 2005, and became very unwell some 8 years later and eventually found this amazing website and have been able to turn things around for myself.
I also found the following book " Your Thyroid and How To Keep it Healthy " very helpful and it is written by a doctor who has hypothyroidism Barry Durrant - Peatfield. He writes in an easy to understand way about all things thyroid, and though we both do not have this amazing little gland, we do need to know how to compensate for the loss.
The thyroid is major gland responsible for full body synchronisation, including your mental, physical, emotional, psychological and spiritual wellbeing, your inner central hating system and your metabolism,. Graves is triggered by your own immune system, and the thyroid becomes the victim of the attack, and the symptoms experienced can be life threatening, scary, diverse and some symptoms just plain ' odd ' .
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 - Levothyroxine + 10 T3 - Liothyronine. T4 is a prohormone and your body needs to convert this T4 into T3 which is the active hormone that the body runs on.
I read we use about 50 T3 daily, just to function, and that T3 is about 4 time more powerful than T4.
Your ability to convert the T4 into T3 can be compromised if your vitamins and minerals, especially ferritin, folate, B12 and vitamin D are not maintained at optimal levels. Somewhere in an NHS range is not acceptable when hypothyroid, and though maybe ' seen as fine ' by a doctor, and no supplementation prescribed, you may need to supplement some, if not all of these, yourself.
Some people can get by on T4 alone, some people, at some point in time simply stop converting the T4 into T3, and there are some people who simply need both these vital hormones dosed and monitored independently to bring both essential hormones into balance and to an acceptable level of wellness for the patient.
Personally I just think that if there has been a medical intervention and the thyroid either surgically removed or burnt out in situ with RAI that both T3 and T4 should be on the patient's prescription for if, and probably when it will be required.
Graves patients have TSI/TRab antibodies that sit on and drive down the TSH causing over production of the thyroid hormones. which was how your journey with Graves started.
The fact that you have now had your thyroid removed simply means that the target of the attack, the victim in all this, the thyroid, is now not there, so your feedback loop has, in effect been broken, so the antibodies might still be firing away, but with no thyroid available to fire up, you remain relatively, symptom free.
These antibodies can still be present in your body and in your blood, and if only a TSH blood test is used to dose and monitor you, there is a very big risk that you will be dosed down, when in fact, you need a dose increase.
It is therefore essential that you are dosed and monitored on T3 and t4 blood tests, and most people feel well when these results show both T3 and T4 in the upper quadrant of their relevant ranges.
Sometimes T4 needs to go slightly over range to supply you with a good level of T3, as it is the T3 that the body runs on, and it's low T3 that generally gives you the debilitating symptoms of hypothyroidism.
Most people seem feel most well with a ratio of T3 to T4 that sits somewhere between 1/3.5 - 1/ 4.5 - and there are some thyroid hormone replacements which are a combined tablet of T3 and T4 and they all seem to be at roughly a 1/4 ratio of T3 to T4.
Currently in the uk NHS doctors aren't allowed to prescribe T3 and should you go down this route you will need to be referred to an endocrinologist and be considered for a trial of T3.
Depending on your blood tests and symptoms, but more likely on where you live, you may or may not be successful in obtaining T3 on the NHS due to local CCG financial constraints, though T3 is widely available, and relatively inexpensive in mainland Europe.
First and foremost you need to get the full thyroid blood test actioned as already mentioned and then post the results and ranges back on here in a new post giving a brief recap of your medical history.
This is where I started a copy of years ago, and you can get back your health with a little help, knowledge and support from the amazing people on this website.
Sorry, I've gone on a bit - hope it all makes some sense.
I'm now self medicating as I was refused a trial of T3 back in 2018.
Yes, thank you and I'm off the sofa and ' back in the room ' - my brain is back though I now risk sounding like a broken record !!
There's a lot to read, reread, and understand and you'll also learn from reading other posts and answers on this website.
This is a just a starting point and your confidence in your own understanding will grow and if needs must, you too can take matters into your own hands, but first we need to know what the blood tests look like and you'll get help and advice on any steps that need to taken and ideally, initially, it makes sense to go through the proper NHS channels and your doctor.
It's shocking when you have your thyroid removed to only discover you still have issues and to only be told by your doctor well your levels are normal..... I can totally sympathize 3 yrs and still having random issues. People here will have great advice.
Hi Batty sorry to hear you’re still having issues. Seems like thyroid removal isn’t the “cure“ I was lead to believe it was. But yes I agree this seems like a great site for help in taking control of your health issues x
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