Could someone please tell me how GPs know a patient is symptom free because their TSH is suppressed and and their T4s are above normal limits? That’s what mine told me yesterday. He is however referring me to a sleep clinic and a podiatrist!
Symptom free?: Could someone please tell me how... - Thyroid UK
Symptom free?
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Redroz1e
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SlowDragonAdministrator
Just testing TSH and FT4 is completely inadequate
Are you still on lansoprazole?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
What vitamin supplements do you currently take?
Previous posts show low folate and B12
Ask GP to test vitamin levels
Have you had both TPO and TG antibodies tested?
Do you have Hashimoto's?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
thyroiduk.org.uk/tuk/testin...
For thyroid including antibodies and vitamins
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
monitormyhealth.org.uk/thyr...
Plantar fasciitis (sore heels) is frequently low FT3 and/or low vitamin D
Insomnia low FT3 or Low B vitamins and low vitamin D
If vitamin D is low, B vitamins may be too. As explained by Dr Gominack
drgominak.com/sleep/vitamin...
healthunlocked.com/thyroidu...
Add results and ranges if you have any
Or come back with new post once you get results
Thank you for the most interesting link to Dr Gominak’s piece.
I post this a lot
I found it extremely helpful. After correcting low vitamin D....I started getting peripheral neuropathy
Adding good vitamin B complex and B12 was very helpful
My latest results are from November
TSH 0.6 (0.3-4.2)
T4 23.6 (12-22)
T3 4.6 (4-6.8)
B12 350 (197-771)
Folate 4.4 (3.89-26.8)
I’m still taking lansoprazole (I tried reducing the dose but I had symptoms again).
I currently take vitamin D and K as well as evening primrose and starflower oil. I took folic acid for a while too.
I had my TPO done in 2017 which was 9 (0-34) but my GP doesn’t test TG antibodies. My own GP (not the one I saw yesterday) agreed with me when I suggested it was autoimmune as I have vitiligo too but it’s not actually been diagnosed. I’ve wondered about doing a private test but worry I won’t be able to get enough blood out.
I wake up tired every day as I don’t sleep well. I have been prevented from doing classes at the gym since September when I got plantar fasciitis and of course my weight is increasing more. My nails are brittle and breaking and I’ve developed constipation which I haven’t had in a long time. I went back to the doctor about a rash on my hand and my foot pain but I asked if all these symptoms were connected to my thyroid function (I also have pains in my knees,hip and elbow) but he said given my test results I shouldn’t have any symptoms. I mentioned my low T3 but he said he would be more than happy with that level if it were his. He said that whilst he understood that thyroid hormones are needed for lots of bodily functions that not al problems were caused by lack of them and that he would refer me
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
is this how you did the test?
So your B12 and folate are likely too low. Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.
chriskresser.com/folate-vs-...
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Low B12 symptoms
b12deficiency.info/signs-an...
You need ferritin and vitamin D tested
Ask GP to test these
Or test privately
How much vitamin D are you taking?
When was level last tested?
Do you supplement magnesium?
Magnesium is often low when hypothyroid and if supplementing vitamin D recommended to add magnesium. Also can help improve constipation
Calm vitality magnesium powder is cheap and easy to use. Best start on low dose as too much can cause diarrhoea
PPI lowers magnesium
gov.uk/drug-safety-update/p...
Magnesium
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
No other medication at same as Levothyroxine, leave at least 2 hour gap.
Some like calcium, magnesium, HRT, omeprazole, lansoprazole or vitamin D should be four hours away from taking Levothyroxine
(Time gap doesn't apply to Vitamin D mouth spray)
Are you on strictly gluten free diet? This helps or is essential for many many Hashimoto's patients. Can also help improve vitiligo
Gluten free also often improves gut issues so that can eventually slowly ween off PPI
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Currently your conversion rate is very poor
Suggest you start on vitamin B complex
Add in magnesium couple weeks later
Get vitamin D, ferritin and coeliac blood test
Try strictly gluten free diet
Get thyroid retest in 2-3 months
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
NHS refuses to test TG antibodies if TPO antibodies are negative
thyroiduk.org.uk/tuk/testin...
For thyroid including antibodies and vitamins
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
monitormyhealth.org.uk/thyr...
If FT3 remains low then look at getting referred to endocrinologist for addition of small dose of T3
Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists who will prescribe T3
thyroiduk.org.uk/tuk/About_...
Thank you so much.
In response to your questions my tests are all done early morning, fasting and no levo. I’m currently taking 5000 iu of vitamin d daily any used to magnesium too but stopped taking it as I don’t really know what I’m doing! My GP is always reluctant to test other things and I wonder if I could do myself more harm than good. My ferritin on 19.11.19 was 140 (13-200) and my vitamin d on 6.6.19 was 107.1 (50-150). I only take my Levothyroxine in the morning with my other meds at lunchtime and mainly supplements at evening meal though I have some meds which are 3x daily. I’m not gluten free as that sound like a huge undertaking to sort out on my own. I did think that because I don’t eat much bread or pasta etc that it would be ok but having read your links ....
I feel that my conversion rate is the problem but when I tried to speak to the doctor about it he got a little annoyed. He said that it was in normal range and if he got that result he would be more than happy.
There’s a lot to take in but at least I now have a plan which hopefully will help me feel better. I’ll start looking for the supplements now. Thanks again.
FT4 is 114% through range
FT3 only 24% through range
Helpful calculator for working out percentage through range
The truth is, they don't know. What's more, they don't care. They have been taught in med school that once your TSH is in range, you can't possibly have symptoms. And what they learn in med school is sacred. They aren't interested in what you say. If you still have symptoms then you must be imaging them and ought to see a psychiatrist. They don't want to learn from experience anymore, that's too much like hard work. They just lean on what they were taught and to hell with real life. Forty years of dogma can't be wrong, can it? Well, yes, dear doctor, it can!
So true greygoose we are being neglected by Doctors because they are using the TSH as a guidance. The NHS must be keeping thousands if not more women and some men ill because of this. Only this morning I was having my nails done talking about my nails lifting because of Graves' when an elderly lady told me her GP had reduced her levothyroxine from 100mcg to 75mcg because her TSH was too low ... she felt dreadful and told me her hair was starting to drop out. I asked her to join this site for advice and I hope she does because her GP knows nothing about thyroid disease.
Almost none of them do - and it seems to be getting worse!
A particularly narrow minded GP nearly fell of his chair laughing when I suggest plantar fasciitis was linked to low FT3 levels ......
Funny how plantar fasciitis completely resolved when T3 was added to my prescription
Oh, they do enjoy a good laugh at our expense, don't they.
Mine too disappeared within weeks of starting NDT. Definitely not a coincidence.
My plantar fasciitis disappeared with improved levels of Free T3 as well. I'd had it for at least 30 years, and just assumed that the problem was caused by me being overweight. But I'm still overweight and I don't have plantar fasciitis any more.
Slowdragon, you could set up a poll. You would probably have to explain what plantar fasciitis is in the introduction though.
Suggested options in a poll about plantar fasciitis :
1) No, I've never knowingly had plantar fasciitis.
2) Yes, I've had it and thyroid treatment reduced the severity.
3) Yes, I've had it and thyroid treatment got rid of it.
4) Yes, I've had it and it hasn't improved with thyroid treatment.
That’s basically what happened yesterday particularly as I suggested that not everyone’s ‘normal ranges’ are the same.
I remember a bald GP telling me it was "only hair" when I asked him about my extreme hair loss. Doctors can be prats sometimes and the trouble is they have our health in their hands and we have no one else to ask for help.
Dreadful! They do have our health in their hands and so should guide us and support us appropriately not let us flounder trying to understand it all ourselves as my brain no longer functions properly 😔
Exactly ... I sat there and cried because I felt so ill and I don't cry very often and I didn't even cry when my mother died of cancer because I did not want to upset my little toddler daughter. This disease can make you so low and you are desperate for help but Doctors look at you and see a middle aged woman who is fat, depressed and menopausal not someone who is suffering with a thyroid that is failing. Things need to change now.
So sorry for your loss on top of your health issues. If only doctors could be a little more understanding. I do hope you are feeling better soon.
I have been taking 75 mcg Levothyroxine daily for the last 6 weeks. Since my medication was increased from 50 to 75 mcg I feel better, not great but nevertheless better than I was. My hair though is not better at all, it is falling more and my nails are also in a bad condition - splitting bending, breaking and so on.
Today I had a blood test to check my TSH. So I hope the GP is going to increase my medication.
My question is whether my hair and nails would improve if the levothyroxine is increased or I need suplements like B7 or something else? About 6-7 weeks ago, my B12 level was within range as well as feritin and folite. I don't know about the rest (vit D, and so on) as they were not tested.
If you can offer some advice would be great. Thank you.
Gosh! So many ifs in any answer to that question, because so many things can affect hair and nails. No easy answer. All you can do is test as much as you can and try to optimise all levels, and see what happens. Just testing TSH is totally inadequate and not likely to tell you very much about your thyroid status. If it is anywhere in range, your doctor will probably consider that's good enough. But, that won't tell you where your FT4 and FT3 levels lie. TSH itself doesn't cause any sort of symptoms. The most important number is the FT3, which they rarely test.
Just having nutrients 'in-range' is not the same as optimising them. The ranges are so wide! I would suggest that you put all your results on here, with ranges, and let people have a look.
Thank you for replying.
The GP said that once TSH is in range then they will test FT4. I suppose the logic behind was that if TSH was 10.20 (range 0.30-4.20), FT4 will be too low anyway. He never mention testing FT3, and from what other people here said, it is unlike to have it tested on NHS.
For the time being, I hope to have Levothyroxine increased to 100 mcg after the test I had today. I should have the result on Monday according to the nurse.
My other results as from 15 Nov:
Serum ferritin 180, range 28-200
Serum vitamin B12 293, range 180-640
Serume folate 14.2, range3.0 - 20.0
Thyroid peroxidase antibod lev -189, range 0-34
When I ask whether this is Hashimoto, the GP said that it did not matter, as the treatment would be the same anyway - increased Levothyroxime.
On 4Oct
FT4 7.8, range 11 -22
TSH 48.70
I started on 50mcg Levothyroxine after 4 Oct and since 15 Nov I am on 75mcg.
My hair though is getting worse 
That is why I was wondering whether 100 mcg levothyroxine will help with the hair or I need other stuff.
I have a GP's appointment on 17 Jan, so I will try to persuade him to have Vit D and the rest tested in 6 weeks together with TSH and hopefully FT4.
Once again thank you for your advice and help.
flo72003
Rather than hijack this post
Please put up new post with your results
Members can advise on next steps
I am sorry. I did not mean to hijack. I will copy my question on a new post.
My latest results are from November
TSH 0.6 (0.3-4.2)
T4 23.6 (12-22)
T3 4.6 (4-6.8)
B12 350 (197-771)
Folate 4.4 (3.89-26.8)
I’m still taking lansoprazole (I tried reducing the dose but I had symptoms again).
I currently take vitamin D and K as well as evening primrose and starflower oil. I took folic acid for a while too.
I had my TPO done in 2017 which was 9 (0-34) but my GP doesn’t test TG antibodies. I’ve wondered about doing a private test but worry I won’t be able to get enough blood out.
I wake up tired every day as I don’t sleep well. I have been prevented from doing classes at the gym since September when I got plantar fasciitis and of course my weight is increasing more. My nails are brittle and breaking and I’ve developed constipation which I haven’t had in a long time. I went back to the doctor about a rash on my hand and my foot pain but I asked if all these symptoms were connected to my thyroid function (I also have pains in my knees,hip and elbow) but he said given my test results I shouldn’t have any symptoms. I mentioned my low T3 but he said he would be more than happy with that level if it were his. He said that whilst he understood that thyroid hormones are needed for lots of bodily functions that not al problems were caused by lack of them and that he would refer me.
TSH 0.6 (0.3-4.2)
T4 23.6 (12-22)
T3 4.6 (4-6.8)
B12 350 (197-771)
Folate 4.4 (3.89-26.8)
Your T4 is over the range while your T3 is only 21% of the way through the range. (I am assuming your results show Free T4 and Free T3, rather than Total T4 and Total T3.) This shows that you can't convert from T4 to T3 very well.
It is low Free T3 that causes hypothyroid symptoms.
Your B12 and folate are also too low. Ideally your B12 would be close to the top of the range, or even a little bit over. Your folate needs to be higher too, ideally in the upper half of the range i.e. approx 16 - 27.
You will have to source your own B12 and folate supplements. Doctors think anything in range is "normal", and never (or almost never) offer help to improve levels which are in range.
The best supplements for B12 are methylcobalamin. For folate you would need methylfolate. If people supplement one or two B vitamins it is a good idea to supplement them all because having very low and very high levels of different B vitamins is not ideal. Some of the popular B Complex supplements people take are :
1) Igennus Super B Complex (2 tablets a day)
2) Jarrow B Right (1 capsule a day)
3) Thorne Basic B (1 capsule a day)
B Complex supplements usually contain Biotin. It is essential to stop supplementing Biotin about 5 - 7 days before blood testing for absolutely anything.
If your B12 and folate levels don't rise sufficiently with one of the above B Complex products you may have to add a separate methylcobalamin and/or methylfolate product to the B Complex for a while.
I don't know if you've had your vitamin D and iron / ferritin levels measured. If you haven't you should get them done if possible, either by the NHS or privately. (Ask for advice on private testing if it becomes necessary.)
Optimising nutrient levels helps with conversion of T4 to T3. Most conversion occurs in the liver, so improving your liver health is a good idea if you can.
The other option is to buy T3 online to add to your Levo dose. Getting it prescribed is extremely difficult, if not impossible, for most people, so we have to buy our own. Ask for reliable links to purchase T3 in a new post. People have to supply such links by private message, they aren't advertised on the open forum.
Thank you very much for all your advice. I’m going to be looking for supplements to try to improve things. Any advice on how to improve my liver health though?
I would suggest searching for "How to improve liver function" or "How to improve liver health".
draxe.com/health/liver-func...
A low carb, high fat diet or a ketogenic diet is good for removing fat from the liver.
dietdoctor.com/new-research...
Good luck. 
GPs don't care about symptoms - just blood test results. They work on the principle of ranges and averages, so if you have results in range, regardless of how you feel, you MUST be OK. It's a bit like saying, "The average shoe size is 6, so if I give you a pair of size 6s and you say they don't fit, you are crazy and must have something else wrong with you, as everyone is OK with a 6". Since it's free t3 that causes and alleviates symptoms, and everyone has their own personal correct level, it doubly impossible to tell anything from just testing TSH and free T4
Exactly! My T3s are always low in range but because they are in range he says I’m fine. I was really poorly when I had my first child. They thought I had HELP syndrome but my test results said not. They gave me an emergency c section only to find my liver was the size of a football and I bled out and nearly died. I tried to discuss this with him but he wasn’t interested.
If you had severe blood loss, look up sheehan's syndrome (which is related to central hypo). If you have that, your TSH will always be low.
Thanks I’ll take a look.
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