Thanks for much for this forum. In the few weeks I have been on it, I have learnt a lot about my wife's thyroid condition. She has asked me to post on her behalf as she struggles to engage with it all given her current brain fog issues. I hope that's OK?
She has been on Levothyroxine for over 20 years, but in the last 4 or 5 years was advised to reduce her standard 150 does downward as she was taking too much - she was starting to suffer from fatigue and that was the response from the doctors. I do not know the metric they were using, but suspect TSH. These last few years however, have seen her take on a roller coaster of fatigue, never feeling great, so at the start of this year, 2020, we decided to take more control with various tests from Medichecks. This has been truly enlightening and shone a bright light on the ineptitude of the doctors she has been seeing.
However, taking back control hasn't reaped the rewards we were expecting and she still feels bad. Interestingly, just before lockdown we managed to get a reverse T3 test done which showed;
Reverse T3: 16 ng/dL (range: 10-24)
FT3:RT3 12.45 (range 15 - 75)
After investigating it became clear that she was not converting very well and this sent us on a different investigative path, eventually coming across this forum (yay!).
So in May 2020, we decided to raise her dose from a combo of 75s and 100s to 100 to bring her T3 up from 3.06 (range: 3.1 to 6.8) at least to see if it made any difference. It did for a short while, but now her T4 is just over range and her T3 has raised (but probably not enough), both of which are to be expected. The latest results, I do believe confirm that she is not converting properly. I have added in the other standard vitamin tests and wonder if you could confirm our thoughts? If this is the case, then I guess we could try supplementing T3 - from where? Any other thoughts welcome.
Other background information; She injects B12 once a month. She gave up smoking in May and is now on nicotine gum. I also note reading in the forum that the Multi-Vitamins with Iron are useless, so we need to make amends there!
Thx SeasideSusie. Good questions. And answers that could indicate some bogus results. Blood was 10:30 after she'd eaten a nut bar at 07:00 (with caffeine) after she'd taken her meds at 05:00. Her multivits contain Biotin and before this forum, so did not realise the impact. The good news is that she is having a full Ultravit test today with Medichecks and this time we've taken account of everything you mention!
Oh glad you are doing another test. The other one wouldve been affected by taking her meds and eating before the test which may well account for the higher ft4 result.
High percentage of autoimmune thyroid patients find strictly gluten free diet helps or is essential
Well done on quitting smoking, but be aware this can exacerbate Hashimoto’s, so thyroid levels need testing more regularly for 2 years after quitting
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3
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)."
(That’s 58% minimum through range)
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
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Thanks for all the pointers. We've tested for Coeliac, but that came back negative although following that test she is now on a Coeliac diet as her brother has it. Just to see if things improve. Also Cortisol was negative. Additionally, she has lost a lot of weight in the last 8 months and is getting very weak, in particular in her hands.
Her antibodies have always been the same level. Well since 2017 when we first had a Medichecks wellbeing test.
It’s difficult to judge her conversion because her fT4 is a little high, but she had a lower fT3 when her dose was a touch lower. The obvious approach would be to trial some liothyronine and reduce the levothyroxine. I would push hard for a trial of liothyronine.
I wonder why they reduced her dose? I have been on 100micrograms for many years. My TSH always comes back flagged as below range but they never change my dose as I feel well.
Have you tried asking her gp to increase her dose again? Did you go back and let them know her reduction made a difference?
I know for many people they do feel the need to take control themselves, it’s just that if she felt well on 150micrograms then perhaps ask to be put back on it?
My suspicions are that in the past, they went on TSH alone. It would have been low and probably scared them into reducing it. It is possible that she has always converted badly, but lived on a high dose of T4 to compensate. All under the radar because of lack of good testing. The doctor tested recently themselves (not accepting the Medichecks results) for Thyroid issues and ONLY tested T4. Based on this, they said she was over medicated and should bring it down ... doh! ... it's just a total nonsense, isn't it?
To be honest they only ever test TSH for me, though at the beginning they tested everything. I don't worry because I feel well.
There are many people here who don't feel well and who can point you in the right direction, but as a first step I'd be very tempted to go back to the GP - mention that you've heard people who are hypothyroid may need a suppressed TSH, and ask could she raise her dose as she hasn't felt well since it was reduced?
I assume you're in the UK. It's possible, but tricky to get lio prescribed on the NHS - this is by far the cheapest option if you can get it. Otherwise, a private prescription can - currently - be obtained reasonably cheaply from Germany [details on the main Thyroid UK site] - but who knows after Brexit transition. With no prescription of any kind, you need to ask for suppliers via a Private Message.
For NHS lio, you must get a prescription from an endo - your GP cannot prescribe it - and not many will, because it's very expensive, it has a short half-life so is difficult to measure, and lots simply do not believe it does any good [I'm guessing none of these are actually poor converters: for me, adding some lio to my levo has been transformative]
You can ask your GP to be referred to anyone - it doesn't have to be the nearest person but obv needs to be reasonably convenient. I'd recommend (a) getting the list of T3-friendly endos from Dionne at Thyroid UK - tukadmin@thyroiduk.org (b) a separate post on here asking if anyone can recommend anyone near-ish to you and (c) as a last resort looking at local hospitals and the thumbnail biogs of endos to see in anyone mentions thyroid or if they're all diabetes specialists.
You will need to show she doesn't convert well - so expect them to run their own blood tests - probably the first NHS free T3 testing she will have had. Good luck x
PS - you are her biggest ally. Most of us hypos are treated as silly/ deluded/ hysterical/ ill informed girlies by the medical profession when it comes to thyroid matters - but a bit of Y chromosome in the appointment room works some strange miracle and gets you treated seriously! Try and go with her, or do phone calls on speaker, and emphasise how YOU can see that she's still not "right" despite her very high free T4
Have you tried the DIO2 gene test. This can confirm if you have this faulty gene which means you struggle to convert. I did this test. It came back positive. For 12 years previously I’d been on Levothyroxine only. Now I’ve introduced T3 it’s been nothing short of a miracle. If you would like to do the test you can get it done privately through Regenerus Laboratories. I paid approx £165 for the test plus a qualified person to call to interpret the result.
I wish I’d got this test done sooner to be honest. Now I know what is wrong (poor T4 to T3 conversion) and why it’s wrong ( positive DIO2 gene). My GP has scanned the report on my NHS file. I now get T3 on the NHS. Previously they point blank said no to a trial. My life has changed dramatically now I take T3.
I also tested positive as heterozygous Dio2 ....... Just like McPammy and many others who make miraculous recovery with addition of small dose of T3 alongside levothyroxine
Helped persuade NHS to prescribe
Plus (private) endoscopy confirmed clinical evidence of severe gluten intolerance, despite zero gut symptoms
Many many people need small doses of T3 alongside levothyroxine, especially after menopause or the longer they remain on just levothyroxine
Would someone be able to PM where I can obtain T3 without a prescription please? We're going to pursue suggestions here in parallel, but if that takes a while to organize it would be great to have alternatives to hand. Many thanks
Thanks silverfox. It would be made so much more difficult without the support of forums like this. I'm hoping we can get her back on track. Life is not much fun at the moment. We'll get there.
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