Hi everyone, am new to the forum, this is my first post. I'm baffled by my blood test results and was hoping somebody may have experienced something similar, or be able to advise.
About 3 years ago I was diagnosed with graves disease, and after being on and off carbimazole for a while, I opted for radioiodine treatment in September last year. By January this year I had developed severe symptoms of hypothyroidism (TSH 141, FT4 0.7, FT3 1.1). I was started on 100 mcg of levothyroxine, and started to improve quite quickly.
By April I was starting to feel unwell again and had another blood test (TSH 30, FT4 21, FT3 4.5). My endocrinologist advised me to increase to 125 mcg of levothyroxine per day on the basis of the elevated TSH, even though my FT4 was at the high end.
I haven't felt any better on the increased dosage, and had more blood tests last week (TSH 17.8, FT4 23.4, FT3 result not shown on my printout, but it says thyroid antibodies positive at 489 which I don't think has been measured before). My endocrinologist has suggested reducing my levothyroxine to 100 mcg/125 mcg on alternative days due to my high FT4 meaning I am overmedicated.
What's puzzling me is why my TSH is persistently high when I have plenty FT4? Has anyone else got this?
Can high levels of TSH make you feel unwell in itself? My endocrinologist thinks my symptoms are due to having too much FT4 in my blood, but is confused as to why my TSH is elevated.
Any help would be appreciated.
Thanks
Craig
Written by
Craigd101
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If they are reconfirming your Graves they will be either/& TSI antibodies or TSHR.
However, if they are either TPO antibodies or/& TG, then they will be confirming hashimotos.
Your blood tests are unusual so indicating there could be more than one autoimmune disease at work. Ask for a print out of your blood test. If you are in the UK you are legally allowed to see your medical records.
They won't be TSI as they bind to the TSH receptor (hence TrAb) and the TSH would be zero. My TSH was zero even when I was hypo. 60 odd percent of graves patients have elevated TPO.
You don't give any ranges - which are absolutely crucial for interpreting blood test results - but it rather looks there as if you aren't converting very well. That could account for the high TSH.
If your thyroid has been completely destroyed - which it rather looks like it has with that initial high TSH - it doesn't really matter which antibodies they tested. They won't be the cause of your high TSH.
Possibly the way to look this is to start by asking why high TSH? There are reasons other than low FT4 and FT3. Including a pituitary tumour, pituitary resistance to thyroid hormone and test interference including by antibodies to TSH.
Hey Craig. Your Thyriod is dead and your pituitary didn’t get the memo so it’s sending out TSH because you don’t have enough T3 circulating. Your doc is increasing your Levo because your TSH is so high and the more Levo you take the higher that FT4 is because it’s probably not converting to T3. So you need T3 added to your Levo.
When TSH has been very high it can take a long time to come back to normal (six months?). We need the refernce intervals to interpret the results. It could be you have impaired T4 to T3 conversion, it would be worthwhile checking your selenium levels. it's also quite possible there is assay interference leading to an inaccurate TSH figure, your doctor should discuss it with the biochemist and try a different assay.
Other possibility for high TSH and T4 are a bump on the back of the head or virus but poor conversion from T4 to T3 seems most likely. How is your ferretin, B12, folate and Vitamin D. These odd results come up most weeks on here. the TSH test is positively random and fickle at times and we dont always know why. I would think while it is playing up you should be treated according to T4 and have some T3 added if that does not resolve symptoms.
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 especially after RAI
Looks like you are not converting your T4 to T3, in your shoes I'd investigate NDT - natural dessicated thryoid. I had graves. You won't have high TrAb (graves) antibodies as they are TSH receptor antibodies and you'd have a zero TSH with them, regardless of your T4 or T3 but most likely TPO or TgAb antibodies. TPO are often elevated in Graves, but if you may also have hashimotos as well as Graves. You certainly don't need a dose decrease, you need the correct medication.
From your previous results, high T4 and low T3, you are not converting your meds. This could be due to an enzyme failure or because you lack the co factors to convert - you need to make sure you have optimal iron, zinc, selenium, B12 etc for everything to work properly.
Also, in your shoes you need to start getting angry and taking control of your health, it is completely unacceptable that you have been left to get into this state, this might mean firing your doctor and finding another. Also T3 is hard to come by on the NHS (my endo professor now tells people to go on holiday to Greece, and buy it OTC, that's how bad it is) so unfortunately you are now in a phase of self education and self care, welcome to the worst club in the world! I personally didn't get on with synthetic hormones, despite being on T4 + T3 combo therapy.
Things only got better for me once I got onto NDT, have a look at the Stop the Thyroid Madness website and feel free to drop me a line if you want to chat. Also once optimally dosed, your antibodies will come down.
PS other thing my very senior endo told me (she's now advisor to the Dept of Health) is that for reasons they don't understand, NDT is 'the only thing that works' for some patients like us. Your brain and body is used to being hyper, for me, I feel well when I'm just the right side of toxic, so right at the top of the ref ranges, partic for T3. Also those of us who've had galloping autoimmunity, seem to have odd cell receptors. My blood results on NDT and on T4 +T3 are exactly the same, but I AM a different person. It is possible to get better, but the only way that's gonna happen is by being smarter than your doctor
It takes months for the TSH to respond and come down . Many Dr's don't know that and go by TSH Only . Big Mistake . FT4 and FT3 are the values that are very important together with the patients symptoms . Your Dr I'm afraid does not *Get It* . You might want to see another Dr who hopefully understands and does right by you .
Thanks for the many responses, and links to articles etc, I'll have a read through them all. I definitely have a much better understanding of it all now.
The consensus seems to be that I'm not converting t4 to t3 correctly, which is causing elevated TSH. I've contacted my endocrinologist's secretary to try and obtain the missing t3 result from my last blood test, and to find out which particular antibodies I tested positive for.
Be aware that NHS endocrinologists are strongly pressured NOT to prescribe T3 (due to outrageous price charged to NHS for what is actually a cheap medication in rest of the world)
UK T3 is £206 for 28 tablets of 20mcg Liothyronine
Germany 31 Euro for 100 x 20mcg
You may have to go down private prescription option to get treatment
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 Levo thyroxine
Greece is 3 euros, my endo professor is telling patients to book a holiday! But for anyone thyroidless, which this chap is now, I'd go straight to researching NDT.
The poor conversion will be causing the high T4 relative to T3, the TSH takes a while to adjust. However, no wonder you feel terrible, and the conversation you have with your doctor needs to be along the lines of 'I have a life to live, a business to run, a job to do, a family to support etc etc etc and it is totally unacceptable that you have left me in this state, you told me xyz (probably, I'm guessing, 'you just take a little pill and you're fine') and I am most assuredly not fine. I want T3 added to my T4." and I also suggest you read the medical guidelines for your illness and go in armed with this rcpe.ac.uk/sites/default/fi... Print it off and have the bits relevant to you highlighted. Anthony Toft was the chair of the BTA and he's eaten his hat on the guidelines. You are a PERSON not a guideline, and whilst it would be counterproductive to be rude (they'll just mark your notes as vexatious), it is in your interests to be well prepared and assertive. They need to know you are not prepared to hang around watching your life go down the toilet due to some guidelines that are not removing your symptoms. And if they bang on about TSH, say 'You've destroyed my thyroid, why do I need TSH?' and 'My feedback loop is broken, this is why I'm ill' Also the absolute worst thing for your eyes is to be left to go hypo, so they need to sort that out pronto.
As Craigd101 is a man...endocrinologist are far more likely to consider his symptoms are real (compared to women) and therefore might consider prescribing T3
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