Hi all,
Hoping someone can offer some advice please.
I was diagnosed with Graves disease in 2010. I have had hypothyroidism on/off going between hypo and hyperthyroid due to drug dose being incorrect.
I am now back to being hyperthyroid TSH is 0.06 and T4 22.8 and again all they do is reduce levoythroxine.
Any advice on how to sort this without the Endocrinolgists as they haven't managed this for over 10 years now.
If it helps I'm 33, female.
Thank you.
TSH is 0.06 and T4 22.8
This doesn’t necessarily mean you are over medicated
Firstly was test done early morning, ideally just before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test
How much levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
Just testing TSH and Ft4 is completely inadequate
you need TSH, Ft4 and Ft3 tested together
Only over medicated if Ft3 is over range
Also ESSENTIAL to test vitamin D, folate, B12 and ferritin at least annually
What vitamin supplements are you taking
When were vitamin levels last tested
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Tips on how to do DIY finger prick test
healthunlocked.com/thyroidu...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
Thanks for the reply, I'm due to see them tomorrow and will ask if they did t3 also.
My vitamin D was checked recently about a month ago and was within normal range. I take vit d supplement daily anyway but no others.
The blood test was early morning around 8.30am no thyroid taken before.
Thanks for the links, will try and get one done again.
Levothyroxine is same brand thankfully every time and dose is 150mg daily.
My vitamin D was checked recently about a month ago and was within normal range.
What was actual result?
Aiming for at least vitamin D over 80nmol
if you feel well and not over medicated on current dose refuse to reduce dose levothyroxine
Request/insist they test TSH, Ft4 and Ft3 together
And request folate, B12 and ferritin levels tested
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
LEVO DOSE SHOULD NOT BE DETERMINED BY TSH
Diogenes/Toft paper:
bmcendocrdisord.biomedcentr...
healthunlocked.com/thyroidu...
The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:
Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis
February 2020 Journal of Clinical and Translational Endocrinology 19:100219
DOI: 10.1016/j.jcte.2020.100219
LicenseCC BY-NC-ND 4.0
Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich
LlINK TO PAPER:
ncbi.nlm.nih.gov/pubmed/320...
sciencedirect.com/science/a...
T4 therapy
ncbi.nlm.nih.gov/labs/pmc/a...
In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.
If you were to need SMALL dose reduction after getting full thyroid testing (and all vitamins at optimal levels) ……then you would experiment with very small reduction…..eg 150mcg 4 days week and 137mcg 3 days week…..retest in 8-10 weeks
So, are you on block and replace? Or have you had your thyroid removed so need levo?
Hello Rebecca :
These blood tests do not mean you are ' hyper ' and if you had definitive treatment for your Graves Disease and now classed as primary hypothyroid and taking T4 - thyroid hormone replacement every day you can't be ' hyper ' ever again - but you could be over medicated / wrongly medicated.
In 2010 what happened - were you treated with an Anti Thyroid drug for a year or two ?
Did you ' find remission ' and but have had periods of on and off the AT drugs over these past years or were you encouraged to have your thyroid destroyed by RAI thyroid ablation or have surgery and you no longer have a thyroid and taking T4 monotherapy for the resultant hypothyroidism ?
Were / are your eyes involved at all ?
This is the odd one as I was diagnosed with Graves disease but they left me on tablet treatment They did no operation never did ablation just medication and it was controlled from 2010 - 2011 and then it's literally bounced between what the endocrinologist told me high to low.
My eyes have always been fine as far as I know as nobody has mentioned it to me.
The symptoms I get at the moment is sweating, I'm very active and sometimes get the shakes.
Do you have there, the medical evidence of which thyroid antibodies were found over range and positive and your original blood test results when diagnosed back in 2010 - showing a TSH, T3, T4 and antibodies generally written as a TPO: TgAB: Trab : or a TSI :
What tablets were prescribed initially ?
What tablets are you taking now ?
I wonder since as you say your thyroid levels are ' bouncing around ' that you have Hashimoto's AI thyroid disease and not Graves since Graves is said to be life threatening if not medicated.
Thanks, originally I went on carbimazole but I had a very rare reaction my muscle enzymes went very elevated so they then put me on PHP I think the other medication for hyperthyroidism.
I can get hold of the medical records but I don't have them to hand.
I'm now on levoyhtoroxine 150mg daily and have been on this dose for about 3 months before was 175mg but again they said too high and before that 125mg. Its never been a stable dose. I will ask for the results and let you know what the blood test originally came back as.
Thanks for your help 👍
Propylthiouracil (PTU)?
Do you remember what dose you took & for how long? If it were for a short time or dose going by TSH measure not FT4 & FT3 you may not have had Graves hyper at all but transient elevated levels & hypothyroid levels from autoimmune thyroiditis. (Hashimoto’s)
You can have fluctuation of levels with Hashimoto’s.
TSH isn’t reliable. You really need FT4 & FT3 tested at same time.
Ok then- thanks - yes please - dig out your medical records as we really need to know if this started off as Graves Disease -back in 2010.
Yes there 2 AT drugs Carbimazole and Propylthiouracil - PTU for short - as I can't spell nor pronounce that easily !!
Ok - so now you are diagnosed hypothyroid and taking T4 - Levothyroxine - and are physically very active and sometimes get a bit shaky,
It could be that your thyroid hormones, T3 and T4 need to be rebalanced within the ranges.
T4 is basically inert and a storage hormone which needs to be converted by the body into T3 the active hormone which runs the body, much like petrol runs a car :
We generally feel at our best when the T4 is in the top quadrant of its range making around a 1/4 ratio - T3 to T4.
The accepted conversion ratio when on T4 monotherapy is said to be 1 / 3.50 - 4.50 - T3/T4 with most of us feeling better when we come in this ratio at 4 or under.
No thyroid hormone replacement works well if the core strength vitamins and minerals, those of ferritin, folate. B12 and vitamin D are not maintained at optimal and conversion can also be down regulated by inflammation, antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing.
Once on any form of thyroid hormone replacement you must be dosed and monitored on your T3 and T4 readings and not a TSH and the odd T4 reading - though fully understand in primary care this is likely all you get and the computer says plus or minus some T4 and would you like antidepressants if confused and not wanting your dose adjusted.
The TSH was originally introduced as a diagnostic tool to help identify a person suffering with hypothyroidism and was never intended to be used once the person became a patient and taking any form of thyroid hormone replacement.
You need to check back through all previous test results see if they ever actually tested Graves’ disease antibodies. High TSI or Trab antibodies would confirm Graves’ disease
Hashimoto’s (autoimmune hypothyroid) frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid
you should have had both TPO and TG thyroid antibodies tested at least once.
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with any autoimmune thyroid disease
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Technically 'hyperthyroid' means thyroid itself is over producing T4/T3 .
once you have become hypothyroid and on levothroxine , a high T4 /low TSH + symptoms of overmedication is usually due to 'overmedication' (dose too high) so not technically 'hyperthyroid' ..... (although the effect on bloods and symptoms is the same as being hyperthyroid).
Your current description of sweating /active / shakes , combined with you high looking fT4 level, does fit with your Levo dose being a bit too high for you .
it sound like they have been adjusting your dose in 25cg increments (simply because that is the size the tablets come in) .. but this is often too large an adjustment, and can result in constant yo -yo ing between not enough/ too much.
To get exactly the right dose and keep things more stable , needed GP's often have to adjust by smaller amounts eg 12.5mcg, or even less.
this is usually prescribed as eg. 'take 100mcg one day, and 125mcg the next , alternate' (gives effective dose of 112.5mcg/ day )
Some of us prefer to take exact same dose each day and cut a 25mcg tablet in half to get 12.5mcg .
Even smaller adjustments can be done by eg. 5 days 100mcg / 2 days 125mcg ( effective dose 107mcg / day )
Hyperthyroid
Hyperthyroidism 
Hyperthyroidism
