Hi, I'm new here but have had a long list of low thyroid symptoms for about 8 years now. Eventually managed to convince the GP to test my thyroid and had a text back from the surgery yesterday evening to say that my "actual thyroid level in the body is normal at 13.6 but a slightly elevated TSH." They didn't give me any further information so I have sent a message asking them to print out the tests so that I can have further details. The test was done at 6pm, would that have had an effect on the TSH level? Also, they only did the basic first test so I don't think they tested for antibodies etc. The GP has offered me a trial course of thyroxine treatment which I would rather not take and would prefer NDT. Do you think it is possible for me to ask for the second thyroid test? Thank you 😊
Thyroid tests: Hi, I'm new here but have had a... - Thyroid UK
Thyroid tests
Welcome to the group. If you could complete your profile it helps members understand your thyroid journey. Click on your image icon to start.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
If your GP has offered to start you on Levo then you are probably best to accept that and make a start on treatment as you are symptomatic. NDT is almost impossible to get prescribed on the NHS. There are few Endo's or doctors prescribing it in the UK and it is very expensive to buy.
Your TSH would have been higher had you tested at 9am which is when TSH is at its highest. next time book for 9am and do the test fasting that day.
Which second thyroid test are you talking about. Perhaps you mean FT3 which the NHS only rarely test. At this point its not so relevant as your TSH is high and you haven't started treatment yet. It will be more important once you get closer to optimally treated on Levo to see if you are converting well.
Further tests that you need: TPO antibodies, ferritin, folate, B12 & D3.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Hi Jaydee. Thank you so much for the welcome and your reply. I've updated my profile. The reason that I would rather have NDT is that I follow several thyroid experts online and they all seem to prefer NDT. I know that it is unlikely it will be prescribed by the NHS but my GP does not seem very up to date on thyroid issues - for example, he knew the tests were for thyroid function yet still booked them for 6pm and told me to have dinner first. I'm probably thinking that I will have to be under a natural practitioner who prescribes NDT but more importantly, who really understands the thyroid as I don't have much confidence in the surgery sadly.
You would find about every GP in the country similar to yours knowledge wise re thyroid. The same goes for Endo's. you have found your way here to a patient group where patient to patient tips are available and no medical professional will have ever heard of them. This group has so much more knowledge than many professionals.
I would recommend trying Levo as it is effective for 80+% of hypothyroid people so long as they are given enough and have optimised key vitamin levels. If you went the NDT route you firstly might not need that and secondly will always be tied to the private sector with pretty high costs. Levo is free at least.
Yes that's true. I think I was put off it because my cousin has been on it for years and they never seem to get her dose right. She swings from overweight and puffy to slim and beautiful as she was before every time I see her and it's really taken it's toll on her. It's a constant rollercoaster for her and now she suffers from depression so that's the main reason I was put off. Especially when I have a GP who doesn't seem to be very well informed.
To an extent what your seeing with your cousin is the nature of the condition, but also likely mismanagement by medics. You do need to become your own health advocate and do research and know a bit about the condition then push forwhat you need to be well. There are many, many under medicated, mismanageged thyroid patients out there and there's no magic bullet to avoiding all of that. You have made a good start by joining this group though.
Yes I definitely did! I've learned so much from here already. Thank you all so much!
Hi BotanicalFairy regards to your cousin..What meds is she on now? Im asking as Im exactly same her situation..been on Thyroxine for years never get the right doses & getting worst..pls let me know if u got her infos Thanks & good lucks on your issues here x
Hi, I haven't been able to speak to her for a few months as she's going through a bad time with it all. I now that she's on Levo but I don't know her dose I'm afraid. I'm so sorry you're going through this too x
Welcome to the forum BotanicalFairy.
The test was done at 6pm, would that have had an effect on the TSH level?
I have attached a graph of the circadian rhythm of TSH, you will see that TSH at 6pm is quite a bit lower than that at 9am which is the time we advise testing to be done, particularly when looking for diagnosis of hypothyroidism.
Also, they only did the basic first test so I don't think they tested for antibodies etc.
Testing of antibodies is not routine, especially for a first test. It may be done subsequently if a doctor has a suspicion of autoimmune thyroid disease and then only TPO (thyroid peroxidase) antibodies are tested at primary level, Tg (thyroglobulin) antibodies may be tested at secondary level.
To be honest, you were lucky to get FT4 done and that might have been triggered by your over range TSH.
The GP has offered me a trial course of thyroxine treatment which I would rather not take and would prefer NDT.
It's very unlikely that you'll get NDT prescribed on the NHS (and certainly not from a GP), it's not licensed in the UK so it has to be prescribed on a "named patient basis" and any doctor prescribing it must take personal responsibility which few are willing to do. The first line of treatment is Levothyroxine and it's only if this proves to be problematic for some reason that you might be offered liquid Levo rather than tablets or referred to an endo to consider perhaps adding T3. What is your reason for not wanting to take Levo?
Do you think it is possible for me to ask for the second thyroid test?
For what reason? You have been offered Levo so your GP has accepted that you have a thyroid problem that he is willing to treat. You could ask for antibodies to be tested but all that would do is confirm whether or not the cause of your hypothyroidism is autoimmune and if it is the treatment is no different.
To be honest with just a slightly elevated TSH and an in range FT4 (they would have said if it was below range) then you have been lucky to be offered Levo, most doctors would wait until your TSH goes over 10 and may want to see that twice before diagnosing and giving a prescription.
Hi, thank you for your reply. That's all such helpful information. The reason that I wanted the second test was to have as much information as possible for myself really. For example, the GP knew that the blood test was for thyroid function yet still booked it for 6pm and told me to have dinner first so I just question how much knowledge he really has about the subject.
the GP knew that the blood test was for thyroid function yet still booked it for 6pm and told me to have dinner first so I just question how much knowledge he really has about the subject.
Unfortunately most doctors are very ignorant about how we should do thyroid tests and they will very likely tell you it doesn't matter as nothing affects the results. We always advise:
Always advised here, when having thyroid tests:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.
In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:
healthunlocked.com/thyroidu...
If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw. If taking NDT or T3 then last dose should be 8-12 hours before blood draw, split dose and adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 3-7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
It might be worth you doing a full thyroid/vitamin panel with one of our recommended private labs, you certainly wont get FT3 tested with your GP and s/he may or may not agree to test key nutrients - Vit D, B12, Folate and Ferritin - patients are frequently told that Vit D is an expensive test and most people in the UK are low so they don't do it.
Have a look at what private tests are offered and decide if you want to do one. Monitor My Health is an NHS lab at Exeter hospital so any results from them may be more acceptable to a GP than results from another lab but they only do fingerprick tests. If you'd prefer to have venous blood draw then Medichecks and Blue Horizon offer that as well as fingerprick tests. Details and discount codes here:
thyroiduk.org/help-and-supp...
That's great information! Thank you so much for taking the time to explain it all. I'll order a test tonight. 😊
Take the thyroxine, it normally works well and it also means you will have free prescriptions for everything. If you then want to go private, that is up to you but at least start with what the NHS is offering.
Hi, thank you for your reply. It's not just the actual meds but the fact that if I am being treated by someone who is an expert regarding the thyroid, I'll have a better chance of a good outcome than with my GP who doesn't know much 😊
The message is a little cryptic because they have given you a result for FT4 - 13.6 but no range - so you don’t know of that low are, not so low, & unless you’ve had a history you don’t know what’s your normal.
Slightly elevated TSH - might mean above range, but it also might mean slightly above the threshold doctors consider it necessary to commence replacement - which is why you have been offered a trial.
Standard starter dose is 50mcg but doctors often say as you are borderline you can start on 25mcg. Which isn’t always helpful.
FT3 the active hormone likely hadn’t been tested either.
Antibodies will show if your thyroid issue is autoimmune and if positive will confirm thyroid likely to decline, this is usual a gradual process.
I would accept the trial & arrange a complete test to get full picture. Using an option offering thyroid function, antibodies & key nutrients. Included is kit for fingerprick sample, you post back and results available online quite quickly.
Levo is standard option offered by GP. They will say they are allowed to offer anything else. Optimal nutrients help Levo to work well & convert to FT3. Some have issues with this but most do well on Levo & the body can convert adequate levels of FT3.
Hi, thank you so much for your reply. Yes, I've arranged to go in and pick up a print out of the tests so I'll have the ranges then as it was definitely cryptic! Also, if they tested my TSH at 6pm, from what I've now been told by other lovely people on here it should have been at 9am, then my actual TSH is likely to be higher than the GP thinks it is. I'll definitely order a test, thanks again! 😊
Excellent advice as ever on here. Just to reassure you re NDT. I'm on NDT but only because the synthetics (Levothyroxine and liothyronine) did not work well for me. I have three friends on levothyroxine and they feel well on it. Many people do if they are optimally treated. So one step at a time. As a NDT user of 15,yrs I would not rush straight to NDT, it's expensive, hard to get someone to prescribe it, Even harder to get on the NHS but not impossible........ With the latter they will require you to have tried the synthectics first in any case. Your pre ription for levothyroxine will be free.I do get my NDT on the NHS but it was a very long battle. So personally I would always go with Levothyroxine first. Keep posting on here. There are some really highly skilled knowledgeable folk on here who can help.... & hopefully your GP is one who is open to listening to you.
Hi, thank you so much for your reply. It's not just the actual meds but the fact that if I am being treated by someone who is an expert regarding the thyroid, I'll have a better chance of a good outcome than with my GP who doesn't know much 😊
Yes you are, quite right..... I didn't mean to imply your GP was the only one....apologies of it read like that. But if the GP is open minded would work well with a specialist. Pick your specialist very carefully as many are diabetes trained & know little about the thyroid.
Hi Waveylines, thank you so much for your message. This person is a thyroid specialist and I’ve just found out from another patient that it’s actually Metavive that he recommends which I’ve just had a quick look at and it doesn’t seem too expensive if it works x
Hi Botanical I've heard of it but never used it. I'm on Armour.Am glad you've found a thyroid specialist. Years ago I had Dr Skinner who very sadly passed so can use his nane. He saved me tbh. Ever grateful for what he did for me.
Hope yours gets you sorted out too. Xx
I’m so glad for you to have found him and for you to be feeling better xx
You have been given lots of excellent advice here. Like others I strongly recommend you start on levothyroxine as offered by your GP immediately. Certainly this GP sounds better than many who insist on at least 2 over range TSH tests to prescribe. As for timing etc I have yet to meet any GP with a clue as to what’s required for these and others blood tests. When it comes to NDT your chance of being prescribed it is virtually zero unless private and pay a fortune for the rest of your life. Until you try levo you will not know. I was prescribed NDT when diagnosed with hypothyroidism sone sixty years ago. Finally forced onto levo only, unfortunately after decades of hypothyroidism levo alone did not really cut it for me. Lots of trial and error later I am on levo plus self sourced NDT. Imost certainly would not want to be dependent on NDT only now it’s so problematic. I have several friends on levo only and they do really well. I appreciate you have been looking into the condition pre diagnosis however, I’d be wary of following online ‘experts’. Unless they are qualified unbiased and accept everyone is different they are often charlatans.
Remember you are not your cousin so will not have the same experience. Have you had ferritin, folate, B12 and D3 tested. Many of these share symptoms of hypothyroidism when they are low. Good luck
When you do start on Levothyroxine, you may feel worse before you feel better with each dose increase until you are on the correct dose and if your vitamin levels are good. If I eat gluten, sugar, dairy, high fodmap foods, it's as if I have never been on Levothyroxine. Don't give up once you start thyroid medication.
Thank you so much for your message. I cut out all sugar, flour etc last September and you’re right, it has helped a lot x
Your main concern seems to be the ignorance of your GP - understandably. But you are fortunate to have found this forum right at the start of your treatment. You will only need to rely on your GP for your prescription. If you post your blood results, Levo dosage, supplements used and symptoms along with any concerns you will receive all the advice you need here.
There may, or may not, be problems in the future if the GP doesn’t treat you optimally, but even then you will get good advice here. And anyway, one thing at a time.
Hi, thanks so much for your message. Yes I agree, this site has an amazingly knowledgeable community and they are also so generous with their time and help.
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