I had a total thyroidectomy in January 2018 for abnormal results from fnb after developing a lump. I had 3 cysts, 2 large and 1 small and the discussion was made to remove the whole thyroid. Surgery went well, extended stay in hospital due to post op bleeding. Home late on day 2. Calcium was 1.9 for 3 weeks, symptomatic with tingling, meds doubled.
I was started on levothyroxin 125. Since surgery I have put on 6kgs despite continuing life as before. In April I moved and changed gp’s. Had bloods done all normal. However started to have a tremor in my hands, stopped having caffeine and this improved this. Still occasionally have this.
Bloods redone at the end of November and a telephone call from the gp to say thyroxine levels too high so reduce dose to 100. Slowly started to feeling extremely fatigued, foggy minded (not the best as I am a recovery nurse), dry skin and the feeling of walking through treacle.... don’t know how else to describe it..!!! Had bloods done again all normal. I have now self changed my dose taking 100 one day and 125 the next. Still feeling awful.
Any ideas of where I go from here... ?
I will go to see the gp when I can get an appointment to discuss. I do however feel that they don’t seem to want to take any responsibility to the ongoing struggle.. this isn’t helped that my medical notes have still not reached my new gp, and as I am sure many people find you see a different gp every time and hence explain everything from the beginning...!!!
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Tillie1
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Tillie1, the first thing to do is get hold of a copy of your fill thyroid panel, this is TSH, freeT4, freeT3. It may be that your doctor won't have don't the last 2, as they often dose on TSH alone.
If you can't get the full panel, you can have a mail order finger prick test from Medichecks or Bluehorizon.
Thyroid replacement needs to be really fine tuned, and you must be on exactly the right dose for you. Doctors typically know nothing at all about this, and will leave people mouldering for years on a very wrong dose.
Those of us who have had thyroidectomies very often benefit from a little T3, because we don't have the benefit of the thyroid making some of it. And the latest research is showing the thyroid does some regulation of thyroid hormone in the body, too, which we are now managing without. Unfortunately its incredibly difficult to get this prescribed in the UK at the moment
Its also useful to get vitamins tested, folate, ferritin, B12 and vit D. These all need to be optimal, so don't be fobbed off by a doctor assaying you are 'normal', get the numbers and check for yourself. This is true of everything, really!
Once you've got some test results you can post them in a brand new thread and members will comment.
Until you start to get things sorted, I find that rest makes a huge differences to alarming symptoms. See how much activity you can cut out of your week, and make as much time to sit down and lie down as you can. Don't feel guilty or stop yourself from having the odd nap, day in bed, etc. When we're low on hormone it's getting use up by activity all day.
You need to click on the blue Reply at the bottom of the actual item you are replying to. When the box opens it will say "Reply to greygoose" (or whatever) along the top in bold black letters.
I can’t seem to do it... am clicking on the reply box and it’s coming up with keyboard... then click on send... doesn’t seem to have any bold type on the top 😩
Highly likely GP only testing TSH or TSH and FT4. Essential to test FT3 and vitamins too
Low vitamin levels are extremely common
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take 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)
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levothyroxine and very important to test vitamin D, folate, B12 and ferritin
Tillie1 my Sympathy for you . I had TT and was dosed with T4 Only . I am Not a good converter from T4 to T3 . We are at a disadvantage that now that we don't have our own thyroids that once made T3 and T4 and all the other components . We now manually have to do it . I would suggest that you run labs prior to adding any T3/NDT . You don't want to add any T3/NDT to already suppressed TSH with a high T4 . That is a hyper state already . I was comfortable adding T3/NDT at 1.1- 1. 2 FT4 .You would want to slowly lower your FT4 value and raise your TSH level . TSH levels take much longer to rice . Once your at a comfortable enough FT4 value add slowly 1/4 grain NDT at a time or a 1/2 of 5 mcg T3 . Hold it for 10 days to two weeks and see how that makes you feel . Just remember to go low and slow . Slow and steady wins the race . You might want to also split your T4 dose half or larger portion AM and the remaining portion PM . I split my T4 2x/day and NDT 3x/day . I find that little tweaks like this make a huge difference .
Ask each time for your lab results and write on them the dose you where on at the time . Meantime journal your symptoms they are *Very Telling * . They are your cellular results .
I tried synthetic T3 with my T4 but it caused me to have anxieties every time I needed to dose and caused me surges too . I tried NDT (made from porcine) for my T3 mix with my T4 and it's a much smoother way for me to get the T3 from the NDT . I would suggest that before you try any T3 /NDT to support your adrenals . Thyroid meds and Adrenals work in unison . Vitamin "C", B-Complex , B-12/folate, Iron if your results are low , B-5 , "D"/K2 Magnesium , Celtic Sea Salt for electrolytes / adrenals .
In addition I found that going Wheat, Gluten, dairy, sugar, soy, coffee free made a huge difference too .
I have not had a thyroid gland since 2001 due to papilliary cancer found accidentally. I now take 100mcg daily, although I started out on 150mg with rather awful effects!! I appear to convert well, although I do wonder how my body works without T1 & T2!!!! I have had 2 hip replacements due to bone loss in my hips. Not sure if I can blame the thyroidectomy for this, but I had absolutely NO ADVICE whatsoever, about bone loss, or other potential problems. When will surgeons tell us the whole story? watch all the vitamin levels etc. Perhaps they don't know!! Information is paramount, then we can make individual decisions about our health after a TT. Brilliant site, I have learned so much, thank you.
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