I had radioactive iodine ablation for Graves’ Disease about 5 years ago, since then it’s been very difficult to manage the symptoms. Recently I’ve had my Levothyroxine increased by 25mcg - this was after some real reluctance from the GP as from blood tests they said I was within normal levels. I finally explained my symptoms and they agreed an increase and found that was helping, it wasn’t completely getting rid of symptoms but it did help. Now I’ve had a follow up blood test and they’ve said my TSH is too low and have reduced my dose without discussion. I’ve read some studies that say that following ablation there way be a wider range of acceptable level of TSH and that the level shouldn’t be the only thing considered when looking at treatment. I think that because my symptoms improved in the end that I should stay on the increased dose but I feel it would be a hard sell, they also haven’t explained any of the risks of low TSH so I could make an informed decision - I have none of the symptoms of hyperthyroidism while on the higher dose.
Has anyone got any advice or a similar experience?
(Posted for my mother 74)
Written by
CharlieGee
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the answer depends to some extent on how low the TSH is , do you have the TSH result and the reference range that was used by the lab ? if not, ask the GP reception to give you a printout of latest thyroid result including lab range .
if it's below range but still higher than 0.04 then there is good evidence you can use to show the ' risk's' to heart and bones are not actually an issue : healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk
see the third reply to this post for links to some useful discussions on the subject of low TSH but feeling fine / 'risks' associated with low TSH etc : healthunlocked.com/thyroidu... /feeling-fine-but-tsh-is-low
testing TSH on it's own without fT4 has it's limitations :
~ if they have also tested your fT4 and that is well within range , then this post has stuff you can use to argue the case to keep increased dose : healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.
~if they only tested TSH, then use the arguments in that post as a reason to ask them to check fT4.
if TSH is below 0.04 (and especially if fT4 is also over range) then it becomes a much more difficult task to get GP to prescribe higher dose.
If your doctor is going just by TSH then there’s a good chance you would not be replaced optimally.
You really need a full picture has the lab tested FT4 & FT3?
Many use private companies for a full picture because FT3 isn’t automatically tested & to make progress you need to see of your key nutrients are optimal.
If dr refuses consider a private test.
Order a kit online and sample can be taken by fingerprick test, (extra fee for clinic visit / home visit venous draw) sample posted back & results available online often very quickly.
Sample recommended to be taken at 09.00 - fast overnight, avoid biotin 3 days before test. delay replacement until after draw.
See link for private companies with discounts with many packages & options.
I was 57 when diagnosed with Graves Disease and I had RAI thyroid ablation the following year in 2005- when I knew nothing and simply trusted mainstream medical.
Graves is an Auto Immune disease which generally only gets diagnosed when the immune system starts attacking the thyroid and or eyes and these are major glands we can't live well without and the symptoms tolerated can be like being on a roller coaster of symptoms with none of the fun - or minimal - with the diagnosis being something of a surprise.
Was your Mum first treated with an Anti Thyroid drug - Carbimazole or Propylthiouracil PTU - and did this didn't suit her or the hospital and was this definitive treatment the only option offered?
RAI is a toxic substance that slowly burns out the thyroid in situ rendering the patient hypothyroid within a matter of weeks or months as the dose of RAI would appear to be more a guess than a fact, and is also depends on the ' state of thyroid to be rendered disabled.
So now your Mum is with Graves Disease but Primary hypothyroid and with no thyroid function - and I am not even sure if the computer knows or takes into account your Mum's medical history.
Sadly there are no special guidelines - and those in place - not fit for purpose -
we are all hypothyroid - whether with or without a thyroid -
I know - it's mad, and thyroid knowledge is sadly lacking -
In primary care, doctors seem to only be able to work with a TSH and an occasional T4 - and trained to keep the TSH in the range - no matter what symptoms the patient is tolerating and tend to offer anti depressants without a seond thought .
Without a thyroid the TSH is a very unreliable measure of anything - and dosing and monitoring should be on the Free T3 and Free T4 readings and ranges.
The TSH relies on the internal HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop working -
but after definitive treatment - either a thyroidectomy or RAI ablation - this feedback loop is broken as the thyroid is either surgically removed - or burnt to a cinder - and unresponsive - with this circuit loop broken and open ended and why your Mum now needs to take thyroid hormone replacement for the rest of her life.
It is essential that your Mum is dosed and monitored on her Free T3 and Free T4 results and ranges - and we generally feel best when the T4 is around 75-80% with the T3 tracking just behind at around 70-75% through the ranges.
T4 - Levothyroine is a pro-hormone and needs to be converted in the body into T3 which is the active hormone that runs the body - much like fuel runs a car -
and the thyroid much like the car gear box synchronising and enabling all the body 's parts to function from ones physicality and stamina, to ones mental, emotional, psychological and spiritual well being, through to ones own internal central heating system and metabolism.
No thyroid hormone replacement works well until the core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels - and it is known that RAI trashes vitamins and minerals, amongst other things.
So, in the first instance I suggest - if your doctor is unable - that you arrange a Private blood test for your Mum so we can see exactly what is going on and we can then offer considered opinion as to how you can help Mum take back some control and steps as to what to do next.
I run my own yearly advanced thyroid blood tests ( 10/11 bio-markers ) and the company I use offers a nurse home visit to draw my blood - I think between them Medichecks and Blue Horizon cover most of the UK - and find this the least stressful way and let the nurse drive to me for around a 9.00 am appointment -
We need a fasting blood draw by around 9.00am and around a 24 window from the last dose of T4 - so we measure what the body is holding and not that just ingested -
similarly stop any vitamins and minerals that are being measured around a week before the appointment and also anything containing biotin that can distort Laboratory assay levels.
I generally make the appointment for a Monday or Tuesday so the sample isn't sitting in a postbox or Laboratory over the weekend congealing and generally speaking the results are back within a couple of days.
You then just start a new post with all the blood test information and you will be talked through the next best steps back to better health and well being for your Mum.
Are your Mum's eyes affected at all. dry, gritty, light sensitive, excessively watering or with pain on one or both eyes if so, please just ensure any drops or sprays or gels she has are Preservative Free - even those prescribed by the NHS.
The most rounded of all I researched 10 years after RAI thyroid ablation is that of Elaine Moore - books and now archived website - as she too went through RAI thyroid ablation and later started researching why she never felt better and is now a world leading researcher into all things Graves and related health outcomes.
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