This summer a GP confirmed I have Hashimotos following an NHS Thyroglobulin Autoimmune Antibody result of 3.000. I have been Gluten and Dairy Free ever since. Private tests, see below, confirm a lower result, 1275.000. I am hoping my diet and supplement approach is starting to take effect.
For two months, prior to a second, 09 August 2018, Consultant appointment, I followed his advice and reduced my daily Levothyroxine from 150mcgms to 125mcgms, his aim being to raise my TSH from 0.04. Meanwhile, he ordered a Metanephrines and Pituitary test. I also took private test results to the 09 August appointment, hoping to provide the Consultant with 'missing evidence' he deduced from earlier NHS test results.
My 06 August 2016 report: Thyroid Check Ultravit rT3 , results were as follows:
The Consultant reports the Metanephrines tests were 'totally normal, too.' My GP reports she is yet to receive a letter detailing results or outcome of consultations. In fairness, I received a brief, direct letter from the Consultant, confirming results of pituitary tests.
Up to this point I had long suspected I might not be converting T4 to T3 as I was still symptomatic. The medichecks test report, Reverse T3 Ratio, indicated this was the case. When the Consultant asked I put further questions to the private testing company regarding their lab ranges, I did just that. The same doctor who reported on my Thyroid Check Ultravit rT3 test results, rang me and confirmed for a second time, I was not converting T4 to T3. He would keep my records as a base line for all future tests.
In summary, during my first Consultant appointment, Department of Diabetes & Endocrinology, my husband accompanied me. He was clear on hearing the Consultant tell me up to three times, he wanted to make me well and he was looking for evidence. I heard the Consultant raise the menopause as a possible root cause (I am 65), four times, by which time my arms were firmly crossed against my chest, the Consultant commented on this. 'Look at you!'
My second Consultant's appointment in August, same consultant, same hospital department, lasted over an hour. My GP later commented, 'An hour! It's only supposed to be 10 minutes.' With evidence now in front of him, he mustered similar rambling explanations but this time my husband recognised we were being deliberately bamboozled because of the evidence. My husband's, 'give him the benefit of doubt' vanished. Menopause was raised again. Three times. The fact my pituitary gland was firing off an amazing ('phenomenal') amount of sex hormones to redundant ovaries had him stitches. He clucked in the same way over my original NHS Thyroglobulin Autoimmune Antibody results, shaking his head the same way, 'why do they want those, I don't understand why they did those.' I didn't respond, though knowing they did them because I begged the GP to include them amongst a range of February tests. Thank goodness I did. That result and conclusion has moved diagnosis forward.
After an hour and fifteen minutes, despite evidence in front of him, the Consultant denied me a trial of T3. I tested him. Should I stop taking Levothyroxine? Unlike my first appointment, he acknowledged my Thyroid health should be maintained long term by continuing my current prescription, 125mcgms Levothyroxine, in his words, he has 'parked my Thyroid to one side of the table.' He confirms he is taking me off his list, referring me back to GP with the recommendation I am referred to the county's Chronic Fatigue Syndrome/M.E. support group, an hour's drive from where I live, 'to meet other people in a similar situation.'
On attending a GP's appointment two days ago (the first time I had actually met my allocated GP since registering 6 months ago), I broke down. Ill health had followed a three day break (fatigue, nausea, acid reflux, hot, cold, dizzy). I'd felt so well recently, but on our return 'a bug' reappeared and I just had to go to bed.
I confirmed to the GP I am very frightened inadequate thyroid medication is threatening my eyesight and cognitive skills. I had so sincerely hoped, and put this to the Consultant, that at the very least I be allowed a trial of T3. I'm adamant I do not want to be propelled by the NHS down a blind alley, in the hope I will swallow their Chronic Fatigue Syndrome diagnosis. I took 30 Uni-Pharma 25ug tablets T3 liothyronine sodium with me to the doctor's appointment and asked her to support my request for a second Consultant's opinion, which she has done. I have had this unopened packet of T3 for six months and haven't taken or started the course, as I've wanted the GP's backing and monitoring. The GP didn't support the suggestion of being able to write me a private prescription as a way of legitimately accessing cheaper T3 in Europe. Neither was she keen to monitor me during a first course of T3. She didn't know or ask what strength of T3 I had acquired neither did she question me regarding my general health. She simply told me to stop taking Levothyroxine immediately, ie the following day, 'what's the point in taking both when you've got the superior'. 10 minutes was up. 'You're well over time, now, you know.' I booked a blood test for six weeks, as instructed, but a doctor's appointment for the same time-frame doesn't become available for another two weeks. I'm warned they go early in the rush.
I am so tired, muddled and confused. Maybe I'm the wrong side of a Hashi's flare. I spent the afternoon in bed again yesterday, my energy dipping after the chimney sweep's visit. I haven't stopped taking Levothyroxine. The unopened box of T3 is nudging my keyboard. The calendar is so full of potential family, friends, gallery visits, ahead. I'm determined to be amongst some crazy hat wearers on Saturday.
Thanks so much if you've read down this far.
Written by
sy28
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At present Thyroiduk.org.uk has a Petition before the Lords and there wasalso a debate a number of weeks ago about the withdrawal of T3 without any warnings - leaving many in the lurch. Many of us take T3 - I am one and source my own but am finding difficulty at present. I also am not medically qualified but we have to take our own health into our own hands at times.
Thanks Shaws, that's reassuring to know I can stop Levothyroxine, it was worrying me. I'll take 25mcg replacement T3 only in the morning and half that amount in the afternoon - could you possibly DM me advice about sourcing T3. My GP would not entertain the idea of writing me a private prescription. I'm apprehensive about safety of internet sourcing. I'm aware of Thyroid UK's Lords petition and wish it every success. Recent NHS experiences have amplified the inequality of care in reaching diagnosis and worse, withholding vital treatment to Thyroid patients. My own experiences of 10 minute GP appointments are proving traumatic, disrespectful and frequently produce a negative outcome if not feeling astute on the day - I have experienced doctors dismissing my notes, taken to the appointment to save time and preserve clarity. Research has been key, I agree with you, sadly it's more and more obvious a duty of care is being ignored and flouted. No wonder more of us are taking matters into our own hands. It shouldn't be like this and puts patients at risk. I think more and more of us should vocalise our experiences - but wait till energy is up to it. It can take me a couple of days to recover from seeing the doctor these days. I'm optimistic we can change this. I've got this far and ThyroidUK Forum is invaluable. Thank you again for replying.
I did read to the end and really needed you to know I don't have much faith in doctors either as they first diagnosed me with cfis/m.e for the first two years following a bad bout of glandular fever 15 years ago. It was a horrible couple of years until I was then diagnosed hyperthyroidism when I collapsed with a resting heart rate of over 100 and then it went into Hypothyroidism which I have been treating by diet all these years by eating a nutritionally balanced plant based diet of nuts, seeds, beans, lentils, vegetables, some fruit and last year went organic. Doctors don't seem to understand Hashimotos which I may now have and probably wrongly diagnosed in the first place all those years ago. I am 74 and still working 40 hours a week and fortunately symptomless so I feel very fortunate and if I hadn't gone for a routine blood test I would still believe I had hypothyroidism. I am now seeing a nutritionist in London privately that understands the plant based diet and hoping that I can with her help reduce the number of antibodies in my blood - waiting for tests to see what the condition of my organs are so I can make any dietary changes I need to make. That tiredness you have I can sympathise with having been there for two years all those years ago. I do take supplements and have recently given up soya and coconut oil - I have all along refused thyroid replacement and listen to my body I do so hope the T3 you are taking is the answer - but try to remember what food we eat is our fuel for our bodies and if we are fighting an auto immune disease food so doesn't need to be filtering out herbicides and pesticides. I hope I don't have to go on a gluten free diet though tried it for 2 weeks and thought all the purchased food were not healthy and so would have to cook everything I needed from scratch. I have recently started adding ginseng to my supplements as well as my usual VEG1, Magnesium, Calcium and Zinc, D3 and an acidophilus and cider vinegar as my prebiotic. I do so much hope you start feeling well soon but don't rely on doctors I never have!
You do not need to split doses. You can start on a dose of T3 equal approx to levo you were taking. 25mcg T3 approx 100mcg of T4. Every two weeks , according to clinical symptoms, you can add 1/4 tablet but take your pulse/temp several times a day when starting and if either goes too high drop to previous dose. T3 has to saturate all of our T3 receptor cells and the work of that one dose lasts between one to three days. Also if you split doses you have to find a window when your stomach is empty.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Dear Slow Dragon, please note my latest results, including Vitamin D, folate, ferritin and B12 levels are included in my post. I took the step of having a medichecks Thyroid Check Ultravit rT3, which included a written report and later spoke to a medichecks doctor following my Consultant's queries ... now I really am confused, your advice contradicts Shaws. See my reply to Shaws. I wait to hear your thoughts with interest. I really appreciate hearing from you.
Sorry - the results above say 2016 - you presumably mean 2018 and these are most recent results ?
You need to improve low vitamin levels first
In which case your vitamin D is much too low. How much vitamin D have you been supplementing?
Vitamin D needs improving to at least 80nmol, but around 100nmol may be better
Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you increase your supplement for 2-3 months and retest. It's trial and error what dose each person needs.
Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk
Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D
Folate is also low. Taking a good quality daily vitamin B complex, one with folate in, not folic acid may be beneficial. This will also give you extra B12
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Dear Slow Dragon, my mistake - 2016 should have read 2018. My latest medichecks test results were Report Date: 6 August 2018. Three results were noted and commented on, these were:
Reverse T3 ratio 13.13 15.01 -75.00
'Your FT3/rT3 ratio is low which could suggest that you are not getting sufficient free triiodothyronine (FT3) into your cells.'
When my consultant raised queries concerning medichecks ranges, the doctor I spoke to at medichecks, who wrote my report, confirmed it was his opinion I had a conversion issue.
I have been gluten and dairy free since May 2018, when my TGA was 3000. Judging by medichecks August 2018 Report, these automimmune antibodies have reduced by over a half. I continue to be gluten and dairy free. I've seen an improvement in symptoms.
25 OH Vitamin D 49.5 nmol/L 50.00 - 200.000 I was disappointed by this result, having previously supplemented and worked in the sun all summer - we have a new 300ft garden including a vegetable patch which I was constantly tending and watering through the height of summer. Thank you for your Vitamin D links and information, I am supplementing again and will retest in 3 months, as advised by medichecks.
I stopped supplementing prior to being tested on 5 August 2018 and providing the consultant with these test results on 9 August with the purpose of demonstrating how low my vitamins would drop, and whether this drop would re-inforce a potential Thyroid link - Consultant in May 2018 and a GP seen in February 2018 had cast doubt on my Hypothyroid diagnosis despite February 2017 5.1 TSH result. As you have pointed out, my overall vitamins are low, which could be due to Thyroid related leaky gut. I am back to supplementing Selenium 200ug, K2 Mk7 90ug, Vitamin D 3200 IU for one month before dropping to 800 IU, Chelated Magnesium, Zinc, Liquid B12 2000ug, 500mg Non-Acidic Vitamin C, Betaine HCI with Pepsin with digestive enzymes, L-Tyrosine 500mg, 5HTP 100mg. I have a blood test booked at GP surgery in October. I might retest with medichecks at same time to compare. Maybe the return of symptoms and fatigue, in the last ten days is partly due to low vitamins. I am very grateful for your time and advice. Thank you.
I am gluten intolerant and need over 5000iu daily to increase levels and about 3000iu daily as maintenance dose.
Vitamin D mouth spray is good as avoids poor gut function
Being out in sunshine doesn't necessarily increase levels. Research suggests soap may wash off much of vitamin D made on skin. Or using sunscreen stops it too.
As an experiment I tested vitamin D before, and after, a week in Tenerife, sunbathing minimum of 2-3 hours everyday, with no sunscreen. But regular swimming/showers. Level did not increase at all.
Perhaps with thyroid issues we just use or need more vitamin D
Alongside or instead of just B12, supplementing a good quality daily vitamin B complex, (one with folate in not folic acid), may be of greater benefit as this keeps all B vitamins higher.
We can be low in other B vitamins, not just B12/folate
All you have to do to see how well you convert is compare these two results. Your FT4 is above mid-range (mid-range is 17). Your FT3 is just under mid-range (mid-range is 4.95). That's not all that bad. I've seen worse conversion.
Your rT3 result does not show poor conversion, it just shows a high rT3. However, your FT4 is not high enough to be causing it. RT3 doesn't actually show conversion rate. At best it shows if your FT4 is too high. It could be too high but your FT3 equally high. The rT3 would still be high even though you're converting well according to your FT4/3 levels. The point about the rT3 test is that it tells you if there's a problem, but it doesn't tell you where the problem is. There are lots of things that can cause high rT3, like a virus or a very low-calorie diet.
That's not to say that taking T3 wouldn't do you good. I felt awful on levo only, even though I converted very well. I only started to feel well when I added some T3. I don't know why.
She simply told me to stop taking Levothyroxine immediately, ie the following day, 'what's the point in taking both when you've got the superior'.
Silly woman! She obviously doesn't know very much about it. There's no reason why you should stop your levo. It's perfectly acceptable to take the two together - but perhaps reduce your levo a little. Some people are perfectly happy on T3 only; others need the levo with it. But the comment about the T3 being superior, well, pretty silly. They are two entirely different hormones with different jobs. Superior or inferior doesn't come into it.
So, if you're going to start that T3, start with a quarter tablet, and reduce your levo by 25 mcg. Then, you can increase the T3 by a quarter tablet every two weeks, leaving the levo as it is. See how you feel. But, don't fret about it. Your doctor doesn't understand T3 and that's why she wasn't keen on it. We know better!
I agree with Slowdragon and greygoose. All good advice. Your conversion is not bad.
If you are menopausal it would be worth checking calcium levels, especially since your vitamin D is low. You need to ensure you eat calcium rich foods at every meal. You might benefit from taking K2-MK7 supplement, boron rich foods equivalent to 3mg daily and magnesium which help you to utilise calcium effectively. These appear to be very important for good bone health. At menopause women lose trabecular bone density (inner bone) of which the spine is highly composed.
Do please ensure good bone care. It's possible that having a thyroid condition makes us more vulnerable at menopause. If you have bone or joint pain, ask the GP if you could have a DEXA scan.
My outlook doesn't relate to my historical age. I'm 65. However, consultant refused to let menopause go, which I found irritating and disappointing - perhaps he thought they'd got my age wrong.
I'm not one of the 'experts' but I just wanted to thank you for highlighting the terrible care (or lack of) we are still receiving. There must be a gleeful rubbing of hands when women of a certain age walk through the door so they can put everything down to the dreaded menopause! Well done for standing your ground. Levothyroxine didn't suit me so I changed to NDT and I feel much better though still tweaking to get to the right level. Good luck in your journey and I had a little chuckle at what the chimney sweep had done to wear you out - have to grab laughs where you can on this journey!
Just wanted to say how wonderful everyone is on here - it makes me so angry to hear everyone’s woeful experiences with doctors - it’s a joy to read such intelligent and informed people both looking for and providing answers.
I’m feeling tons better tho whether that’s the levo or the b12 and folate I really don’t know, but I’ll continue to experiment on myself following all the amazing knowledge and advice here. Will try zinc and magnesium for a month before seeing Endo, tho no idea of levels, to see if that might sort my aching hips.
Everything you say is sadly familiar to me. I wish I could magically give you an answer but as your experience shows , the level of ignorance regarding Hashimotos amongst endocrinologist in the UK is appalling. I've been down the same path ..same symptoms many many times. .after 12 years of Hashimotos i am still playing Russian roulette with my body as regards t3 and t4..and have no monitoring. It's so hard. I also have 'M.E'..no help there either. Just arrogance and derision from the experts as they quote the NICE guidelines. In the end I have got my t3 on prescription which I take with t4..but it's not a magic bullet. The Hashimotos still causes reverse t3 I'm afraid. .it's a daily battle. I suggest you start low and monitor everything that happens. .gradually building up to optimum level. Good luck. ..keep going. .
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