I phoned the doctor this morning to discuss the results and was fobbed off at the beginning BUT I was armed with the NICE guidelines on sub clinical hypothyroidism, of which he was unaware. He agreed to trial me on 50mg levothyroxine. I can’t believe he’s offered me a trial but also, can’t believe how, just like that, I’ve been given something I think I’ve needed for years.
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Hi all.
History :-
Various tests since 7-8 years ago showing above normal TSH and more recently the below:
Medichecks finger-prick test, May 2022
TSH - 9.17 [0.27 - 4.22]
T4 - 10.5 [12 - 22]
T3 - 4.55 [3.1 - 6.8]
Doctor blood test, June 2022
TSH - 5.81 [0.35- 5]
T4 - 10.7 [9 - 21]
T3 - not tested
Doctor blood test, December 2022
TSH - 9.52
T4 - 10.6
Advised for a repeat in March and likely to be put on tablets
I’ve posted on here a couple of times over the years due to concerns about my thyroid results and the doctors not wanting to treat me.
I recently got a blood test which showed a TSH of 9 point something, and was told that I would very likely need to start lifetime medication but after a repeat test in 3 months. She asked me of my symptoms and then went on to say that I’m not currently hypothyroid as my T4 level was allegedly in the normal range but will likely become hypo eventually.
I’ve had symptoms for about 7 years of tiredness and an inability to get fit, along with coldness, constipation and depression. These have since got worse over the past few months (including depression, which I’m currently being treated for but seems to be becoming ineffective) but am unsure whether this would be down to the thyroid considering my levels. The doctor seems to be suggesting that I shouldn't be having symptoms.
I’m so tired of the merry go round and not being myself. I’ve recently become very irritable and haven’t been myself for a long time. The anti depressants gave me a good boost and helped my no end but over the years, I’ve been trying other ones as I felt they were becoming ineffective.
Are these symptoms likely to be a result of hypothyroidism, really? Also, how did getting medicated improve your quality of life? I’m a 31 year old female.
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In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
1.5 Managing and monitoring subclinical hypothyroidism (*note . in NHS 'sub-clinical hypothyroidism means TSH 'over-range but under 10' with fT4 still in range)
"Tests for people with confirmed subclinical hypothyroidism
Adults
1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.
Treating subclinical hypothyroidism
1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.
Adults
1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
symptoms of hypothyroidism.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."
By the sounds of it you could / should have been started on Levothyroxine years ago .
Probably instead of being given antidepressants .
Based on your TSH results this year and your symptoms you could (and definitely should) be started on Levo now, never mind making you wait til March. ~ especially when your below range fT4 on 2 occasions is taken into account .. (i''ll bet you 50p that the latest fT4 which is allegedly in range is ...'only just in range')
By now they should definitely have tested your TPOab (Thyroid Peroxidase antibodies) to look for an autoimmune cause of your 'sub clinical' hypothyroidism .. ask them if they have ...and if not , why not.
The distinction between sub clinical (TSH over range /T4 in range) full blown (TSH over range/T4 below range) is rather arbitrary, based solely on ranges . It has absolutely NOTHING to do will how unwell an individual may feel with those numbers.
i was diagnosed and treated with TSH 5.7 then 6.8 .. (ie less bad than yours).. my T4 was still about 30% of the way in range.. (less bad than yours) ...my TPOab were extremely high ,meaning it was definitely my immune system attacking my thyroid, (and therefore not going to get any better by itself) I felt bloody awful ,and it was seriously affecting my ability to work and look after my kids.... So don't think that just because your fT4 is still in range you can't be feeling all sorts of hypothyroid symptoms .. you absolutely can.
Reading stories like yours makes me bloody cross. They leave people thinking it's all in their head for too long .and give people the impression that they "can't possibly be having symptoms yet" When in reality, everyone is different .. some people do get really debillitating symptoms that effect their daily life when still ' sub -clinical ' , and some don't .
~ Granted there are some cases where 'watch and wait' is clearly sensible ..eg, if the TSH was only 5.4 and kept dipping back into range... if the fT4 level was very good ... if the TPOab results were negative ... if symptoms were unclear etc ... but your history of results and symptoms seems pretty conclusive to me.
At the very least , go back and ask them about the testing for TPOab .. even the most cautious/ reluctant / dismissive GP should do that now.. it it hasn't been done already .
But personally .. i'd take these NHS guidelines (up my sleeve, in case they try to fob you off) ,and push extremely firmly for an explanation as to why they think you shouldn't start levo now ... not in March .
Thanks T. Not sure if you’ve noticed my update on original post but I saved the bit of the NICE guidelines for when my GP would fob me off and he actually listened and accepted he didn’t know about that advice and wrote me a prescription of 50g Levo. Still can’t believe how easy it was done!!!
p.s you might want to keep this up your other sleeve for later healthunlocked.com/thyroidu... for when they say "oh, but your TSH is back in range now (4.9999!) so you don't need any more than 50mcg"
Amazing news! Good for you! I’m doing a little dance! 🎉🎉🎉Now you can stay on top of 8 weekly blood tests and demand an increase as this is just the beginning 🙏.
Take care with starting, you might want to do alternate days, otherwise it’s a bit of a shock to the system. I had to go steady increasing from 25 to 50. Post all and every question here as it comes up, lots of help available which I found so valuable.
See how you go with the brand prescribed, it’s not always plain sailing depending on ingredients. Ask here if you get burps, bloating, or other discomfort.
How are your vitamins? Working on these improves absorption.
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