I have Graves disease since 2007 and had thyroidectomy in 2019. I have felt fine for the last 4 years on levothyroxine (75mcg Monday to Saturday, 50mcg on Sundays). I've recently developed digestive issues with some indigestion and morning diarrhea or loose stool at best. Had FIT test which was negative and blood count, liver and kidney function all fine, as well as urine test. I have been unwell on and off with slight headaches in the mornings and rapid heartbeat (upon waking up) and I suspect wheat /gluten intolerance as my symptoms ease the days I don't eat bread. The GP agreed to test me for celiac and IBD marker (calprotectin) and also thyroid (but TSH only, although I tried to convince him to do T4 too. Said it was not needed, and the Internet is awash with false info etc). The problem is he wants me to wait for another 3 weeks for these tests while eating gluten which I think/know will only make me feel worse. I understand it gives a better chance of testing celiac accurately but I have not actually been on a gluten free diet strictly speaking, I just stopped bread for a couple of days last week to notice the difference. I had bread yesterday at lunch, and felt not great again this morning. So I really wonder why he wants me to wait that long :(I will try to talk to another GP and get the tests done sooner but in the meantime I woukd like to get a proper thyroid test. I looked at private test for full thyroid and considering medicheck. I am seeking advice on which test to go for. For the advanced thyroid function test (£86), it recommends to have blood rather than home testing.
Has anyone done this test and is it worth paying the extra and go to a clinic to have this done? Are there any other providers you would recommend? I live in north somerset, very close to Bristol.
NB: Last TSH result was on 8th July and normal (0.41). Had this done as I felt sluggish in the morning and the digestive issues just started.
Thanks in advance for your help.
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Sophitje
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It is essential that once on medication for thyroid hormone replacement that we are dosed and monitored on our Free T3 and Free t4 readings and those should be balanced within the ranges at around a 1/4 ratio T3/T4 once your T4 is up in the top quadrant of it's range.
This is especially important once with Graves disease and after the loss of your thyroid either through a thyroidectomy or RAI thyroid ablation - and yes i too was monitored and dosed on just a TSH reading, with an occasional T4 reading and around 10 years after RAI thyroid ablation in 2005 became very unwell.
I fell into this forum researching low ferritin as that was my only diagnosis from the NHS and since I couldn't tolerated the NHS iron tablets was looking to see if there was an alternative as I was not offered any option.
So, yes, we do need to see a full thyroid panel to include ferritin, folate, B12 and vitamin D which is a venous blood draw and I too choose Medichecks for my yearly MOT and pay a surcharge and have their nurse home visit service to draw my blood as I find this the least stressful option as live in rural area.
Arrange the blood draw test for a Monday or Tuesday - so there is no risk of your bloods being held over a weekend somewhere - and make the appointment for early morning and if possible by 10 am.
Do not take your T4 for that day - so leaving around a 24 hour window from your last dose of Levothyroxine - do not worry - T4 is a prohormone - stored by the body waiting to be converted by the body into T3 which is the active hormone that runs all your bodily functions.
If taking any supplements - leave these all off for around the week beforehand so we measure what your body is holding on to rather than what has just been ingested.
When with the results just start a new post / question with all the results and ranges and you will be talked through what it all means and advised of your next best steps back to better health,
For all things Thyroid - Thyroid UK - thyroidukorg - the charity who support this amazing patient to patient forum - where you can read anybody's and everybody's profile by simply pressing on the icon alongside any remarks they have made.
Dear Pennieannie, many thanks for your comprehensive reply and sound advice. I am not completely new to this forum (see my profile/history) and i have read here and other sites that T4 and T3 need to be tested as well, but as I was feeling fine, I did not take a proactive approach like yours and will surely do a regular check from now on, like you do. My digestive issues may not be fully thyroid related (food intolerance seems likely now, perhaps gluten or wheat) but it may add to the problem. I know that leaky gut is common for Graves patients. Can I ask you please which test you do for you yearly MOT? Is it the 'Advanced Thyroid function test' on Medicheck ? Thank you so much 🙂
Oh - I didn't look back and just presumed you were new to the forum :
Yes - I now run a yearly private blood test and the same one you selected- around 10 blood tests from a venous blood draw.
I've been self medicating since 2018 after the NHS refused to prescribe a different treatment option to T4 monotherapy and am much improved.
We are generally under or wrongly medicated and a slowed metabolism can cause all sorts of digestive issues - so - let's see what the bloods say as then we have some facts as well as the symptoms being suffered.
Hello Pennyannie,I thought I'd give you an update as my GP did ask for thyroid blood test and it came back on Wednesday as low TSH (0.09)and high T4 (16.7. Normal range 7.9 to 14.4)
So over replacement seems to have been the source of my problems. Now that I look back, I can see that beside the diarrhea (which was never a real issue even when I first was diagnosed with Graves), I had some of the hyper symptoms, like very fast heartbeat in the morning which I put down to anxiety about my bowel issues and fearing it was cancer or crohn etc.
I was very surprised by the result (but also relieved) as I was already on a low dose seeing I have no thyroid at all. Also my last test in early July (when I started feeling a little off and digestion was poor, so asked gp for test) was then normal (was only given Tsh though, of course being an nhs test) 🙄. Not sure what swung the levels, as I follow all the guidelines when taking my medication). I now have to take 75mcg 4 days a week and 50 for the other 3 days. I started on Thursday only and still not feeling good. Gut better but hyper symptoms, like headaches, dry and sore eyes, feeling edgy, all appeared with a vengeance. Repeat test in 8 weeks so hoping it will have all settled then.
I have also booked a test with medichecks as we discussed (before this nhs test). It's on Tuesday so not long now). I have been stopping B12 for over 2 weeks now as recommended and I'm not on any other supplements. This will give me a better idea or where I'm at in terms of T3 and Vit D, B12 etc.
I'm going to start to take selenium again as in the past it helped with the eyes and overall balance.
I'll post the medichecks results here when I have them.
OK then - start a new post when you get back the Medichecks full thyroid evaluation.
Do you know the procedure - early morning blood test, fast o/night just taking in water and taking your daily T4 medication after the blood draw - so you have around a 24 hour window from your last dose of Levothyroxine.
We really need to test when you have been on the same dose of T4 or 6-8 weeks so are you staying on this presumed too high a dose until after the blood draw ?
( though guess if you've dropped your dose already it will not make much difference - no worries )
Please ensure all eye drops and ointments are Preservative Free even those prescribed by the NHS.
It's in the morning at 8.30 so yes, going to take my Levo after that. I don't expect the test to tell me much re thyroid function as I'm clearly overactive and reducing the dose is what I need in the first instance. FT4 too high. I was more interested on the result for b12, D, etc. But maybe I should postpone it thinking of it, and do it in a few months so I can get a more relevant read in particular with regards to the FT4/T3 ratio. I believe you have a few months to use the kit from medichecks, I'll have a look at my account and guidelines again. I use celluvisc 0.5 Carmellose sodium,they're good drops and work well for me.
The medichecks results have come back and interestingly so, the thyroid result was within range. This blood test was taken only 8 days after the one I had through the NHS which showed an under range tsh and too high T4 (see previous post) and only 5 days after I lowered my levothyroxine intake following the GP advice. I was a bit surprised by this very quick readjustment of the tsh and T4.
I feel better now and the stools issue and digestion have settled so it seems over replacement was the real issue. Let's hope it doesn't swing the other way next. The medichecks doctor comments were advising about adding folate rich food. TPO are a bit high but to be expected with auto immune / graves.
I have resumed B12 and Vit D after the test but nor sure if I should take other supplement like folate.
Maybe best to leave it for a few months and retest?
You mentioned the T4/T3 ratio in your first response to me. Do I understand that mine is all good (1/4) ?
Many thanks,
Sophie
Results below (also put in calculator tool for the reading of ratios)
If you could start a new post you will get more responses to your new blood results.
It's unlikely you were hyperthyroid on your previous results as you no longer have a thyroid. What time of day was each test taken? 9am or earlier is the recommended time for blood tests as is when TSH is highest. Later in the day will result in a lower TSH.
Also remember to allow 24 hours between last dose of Levo & blood draw to show stable blood level rather than the peak of when you have recently taken Levo.
You may need the addition of a small amount of T3 as you don;t seem to be converting well although you have room for a small Levo increase.
If these results were 5 days following a dose reduction you should retest after 6-8 weeks on a stable dose as they will not be reliable.
Vitamins are looking good other than folate which is deficient. Show GP these results, they may want to retest then prescribe folic acid. Once you finish the folic acid prescription I'd suggest you by a good methyl/active type B complex to maintain your level.
Thanks you for your reply. You are right, overactive is not the right word here. I was over replaced and had all the symptoms. I had booked the medichecks test before having the GP test and result and I should have postpone it, did things in the wrong order, but to cut a long story short, it was not possible. I was more interested in the vit and minerals results to be honest and I appreciate I will need to wait another 6 weeks or so to do a repeat full thyroid function test. Yes, I always follow the recommendations before taking the blood test. Sorry my post was confusing but it was intended to Pennyannie who had been following my case and had the full picture. Re folate, it may have been low as I had cut certain foods thinking I had IBS In fact the diarrhea bouts and indigestion (and weight loss) I was suffering from the last 3 months were from too much levo so hoping that returning to my normal diet will help, but I will follow your advice and discuss with doc and also thank you for the vitamins complex recommendations
Yes I'm aware. You may have missed the first result which were before I adjusted/lowered the dosage of levo. It was done by my GP/nhs : TSH too low (0.09)and slightly high T4 (16.7. Normal range 7.9 to 14.4). The medichecks tests & results I posted yesterday were later, but by only a week. I had strong symptoms of over dosage and lowering the dose and following my gp advice worked within 10 days. Hopefully it will continue to be the right dose for me but only time will tell and I know now that I will need to test the T3 regularly and use medichecks as my GP will not test T3. Thanks again
Yes I take my levo early morning around 7am (and don't eat /drink coffee until 1 hour later) and always wait until after the blood test (usually booked for 8.30 or 9am) to take my dose so well over 24h. Since the thyroidectomy, I have often been borderline over replaced but without symptoms and over the last few months I may have taken too much (I was supposed to cut dose 2 days a week, at weekends, but must admit I often forgot and took the weekdays dose at weekends as well so 25mcg too much weekly. I am now making sure I alternate. I'm on 4 days at 75 and 3 days at 50. Feeling good right now so fingers crossed it will continue.Thank you again for your reply and help
I very much doubt these results will be accurate in 6-8 weeks time as that is how long it takes for any dose adjustment in T4 to take effect - in a blood test - though fully accept your symptom relief was more immediate.
But what we can now see is that you are struggling to convert the T4 into T3 as your conversion ratio is coming in at 4.69 and over the accepted ratio which is stated as being 1 / 3.50 - 4.50 - T3/T4 - with most of us feeling at our best when we come in this ratio at 4 or under.
Conversion of T4 into T3 can be down regulated by non optimal vitamins and minerals, any physiological stress ( emotional or physical ) inflammation, dieting, depression and ageing -
and of course the elephant in the room is that you have ' lost ' your own natural thyroid hormone production of T3 - and it hasn't been replaced by the medical mainstream as you are on T4 monotherapy.
The logical solution would next be to restore your thyroid hormonal balance by adding in a small amount of T3 - Liothyronine to rebalance your T3 / T4 and restore your health and well being fully.
It would be a good idea to follow Jaydee1507 's advice below as any new information, especially blood tests, deserve all forum members input as currently I'm just the one person who will see your new results - and whilst I'm glad you are reading and learning from the forum - you deserve full information on your next best steps back to better health.
I've come out the system as I couldn't get well within it - that may not be you - so hang on in there and repost these results etc - and lets see what other options are advised.
P.S. - Looking back at your post from 5 years ago - I have now read about lithium being used as a treatment prior to surgery - though have no experience of same :
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1.T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg :
You have had a thyroidectomy and so lost all of the above and being prescribed T4 monotherapy,
Some people can get by on T4 - Levothyroxine only :
Some people find, at some point in time, that T4 seems to stop working as well as it once did, for them. and by adding in a little T3 - they feel improved.
Some people can't tolerate T4 and need to take T3 - Liothyronine only :
Whilst some people find their health and well being better restored taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.
Up into around the year 2000 all these treatment options were available from our doctor - sadly no, mostly due to costs, your doctor only had T4 and anti depressants as a solution to your situation and you will need a referral to an endocrinologist to assess your needs and sadly financial constraints rather than medical need seem to be present in some areas of the country as it is a post code lottery as to if you get the most appropriate treatment option for you.
If you let forum members know where you live in the country you will be helped and advised as to the CCG/ICG restrictions in your area and if you need a referral to a sympathetic thyroid specialist Thyroid UK the charity who supports this forum hold a list of patient to patient recommended sympathetic thyroid specialists both NHS and private which you can acquire by simply contacting admin @ thyroiduk.co
Thank you, great info and advice! I will see how I get on in the next few months and retest and look at going privately should I struggle with the conventional treatment. My endo during Graves was great so would try to see her again I think. (I live in Bristol).
Also the next time I do a test, will post for everyone to see. This time was a bit particular as I had not waited long enough to have the test on medichecks so not meaningful at all for the thyroid function (and for others to try to interprate), but useful to find out about my levels of ferritin, b12, folate etc. Thank you again
Yes that's what I meant by "overactive". Over replaced. The symptoms are exactly the same. Since the op I have had to reduce the dosage a few times, from 100 to 75 and again to taking 50 some of the days. But never had the symptoms. Looks like I need even more reduction.
Symptoms taking me back to pre op when I was unwell so bit discouraging, but I've been there before and know I need to be patient, it will take time to readjust.
Yes, I'll keep the test I think. I have a nhs repeat in 8 weeks and if that's normal in terms of TSH/T4 but still not feeling good, I'll do a medichecks test again but just the standard thyroid one, quite cheaper.
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