I would love some advice before going to see the endo next month. I was diagnose by Dr Durrant-Peatfield many years ago as hypothyroid, without the aid of blood tests. Then I emigrated and searched - without success - for another doctor willing to continue treatment. I have struggled with all the symptoms for so long now it has almost become normal, if totally life limiting. However, eventually I had to resign from my job as so ill, and have decided to make a final effort to get help. BUT all my blood tests come back 'within normal range'. The results are not optimal, not one, so my question is this: has anyone out there with 'normal' blood tests, been diagnosed with hypothyroidism and treated?
I'm very willing to fight my corner, but need some straightforward, honest advice.
Thank you.
noquitter
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noquitter
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I am not on any medication as current status is undiagnosed. After the above results GP prescribed vit D high dose, and I have taken B12 (spray) supplement for the last 18 months as it was at very bottom of range (but still in 'normal range').
My TSH has been higher (3.0-3.5) in previous blood tests. GP would not do Tg test, and the FT3 result, although taken at the same time as the above, was not included on the printout and was given over the phone by the receptionist.
My GP asked me what I thought we should do next, and when I asked for her advice offered none. So I requested referral to Mr Pope (on Thyroid UK list). She said she would refer but could not guarantee that I would see Mr Pope.
Sorry if this is too long winded. I would be very glad of your (such well informed) advice. And again, can I have hypothyroidism in spite of these results?
Can you please clarify about your antibody result because back in August you posted
TPO anti/b less than 10iu/ml (0.0 - 10.0)
and now you've indicated >10 which is greater than 10.
Your TSH is on the high side and I see that you previously said that this is the lowest it's been for 4 years. A normal healthy person would have a TSH of no higher than 2, often around 1, and FT4 would be around mid-range-ish and yours is only 25.19% through range.
Your nutrient levels are very poor which wont be helping.
Vit D 37 (60-150 nmol/L)
What dose did your GP prescribe, are you still taking it and are you going to be retested?
The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L.
To reach the recommended level from your current level, based on the Vit D Council's suggestions you should supplement with 5,000iu D3 daily.
Retest after 3 months.
Once you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council.
I have had great success with Doctor's Best D3 softgels and raised my severely deficient level of 15nmol/L to 202 in 2.5 months and now maintain it at the recommended level.
D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc. 90-100mcg K2-MK7 is sufficient for up to 10,000iu D3.
I like Vegavero or Vitabay K2-MK7.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.
B12 344 (110-914 ng/L. This after 18 months supplements)
You should have probably been tested for B12 deficiency back when it was lower. Many people with a B12 level in the 300s have been found to need B12 injections. Can you recall having symptoms of B12 deficiency before supplementing, you can check those here:
This is folate deficiency, less than 3ug/L is used as a guide for folate deficiency - see cks.nice.org.uk/anaemia-b12...
Folate level
◦Serum folate of less than 7 nanomol/L (3 micrograms/L) is used as a guide to indicate folate deficiency.
Has your GP done anything about this.
Ferritin 39 (10-180 ng/L)
Low ferritin (yours is 17.06% through range) can suggest iron deficiency or iron deficiency anaemia. You should have had an iron panel (shows deficiency) and a full blood count (shows anaemia) done at the time. Has anything been done about this low level?
Ferritin is recommended to be half way through range and according to some sources the optimal ferritin level for thyroid function is between 90-110 ng/ml.
Cortisol 214 (185-624 nmol/L)
I don't know if that's rather low so I'll ask Hidden to comment if she's around.
The TPO was a typo - the > should have been the other way round. ie less than 10.
The GP prescribed high dose of vit D for 7 weeks - which will be retested in a couple of weeks. (the vit D gel sounds v good). I have also just started supplementing with magnesium.
Re: B12. I agree that it is v low and argued about shots when it was much lower, but as it was in normal range the GP thought I was mad (if I had attended my daughters surgery 25 miles away, where the range starts at 210, I would have received shots) I have been supplementing for 18 months and have almost tripled it, so will continue.
Re: Folate. The GP mentioned it in passing and suggested supplements - which I am now taking.
Re: Ferritin. This has again been much lower and the GP didn't mention it at all - and at the time I forgot to mention in as well, but will raise it next time.
I still want to know if any of this is indicative of thyroid issues. I have a big family history of thyroid disease, and all the symptoms, and have been diagnosed in the past, and a chiropractic said I had an enlarged thyroid - but I'm in the dark, I'm afraid.
Thank you again. Your help is very much appreciated.
It’s simple really, you are clinically hypothyroid and need levothyroxine. Incidentally, so called normal range is merely the labs range So you can compare with other lab results and being somewhere in it doesn’t mean you are around the most common healthy normal Levels or that you are normal for you! All the rest of that stuff is insignificant compared to the actual thyroid hormone status.
Hi. I had to smile when I read your reply because it started with 'it's simple really....' am I over-thinking the whole darn thing? Your answer made a small light go on in my head - at last! Then at the end you wrote '..the rest is insignificant compared to the actual thyroid hormone status.' I can hear people groaning as I ask this - but how do I know what my actual thyroid hormone status is? I'm missing something - unless the status of my thyroid hormone is = how I feel. Is that the point? I 'm so sorry. I really need to understand this.
Keep a symptom diary. Do regular blood tests of TSH FT4 FT3 at the same time of day at 2 monthly intervals. Only change medications when you get a blood test back so you can monitor the effects of any change between then and a new blood test. Aim for your peer group healthy normal blood thyroid function test levels e.g. mine are tsh about 1 ft4 about 15 ft3 about 4.5 allow time for symptoms to settle or improve, if they don’t, adjust the medication accordingly until your blood levels and your symptoms are stable for the better. You are looking for sustainable stability not too many ups or downs and not much fluctuation in blood levels of all three, and a good balance of all three i.e no one level extremely high or low. Thyroid status is the TSH FT4 FT3 balance and whether you have symptoms of hypo or hyper thyroid, the key symptoms mind, not all and anything that could be thyroid related!
Yes, I have kept a diary for some time. I don't consider any ache or pain, but only the most typically hypo symptoms - although there are many more. As I have been offered no medication at all I am not yet at the stage of attempting to monitor and adjust.. Thank you for the info about stability and balance - important to know - and telling me what your personal 'bests' for TSH, FT4 and FT3 as this too is helpful.
Your TSH could be said to be double healthy normal and ft4 dragging along the bottom clearly less than healthy normal, The only anomaly is your ft3 which looks somewhat high although in the absence of the lab range its not clear, it could be well be a sign that your body is trying to make up the deficit of T4 by producing more t3 !
Sub clinical hypothyroidism maybe.... but even so you would be more than justified to ask your physician why you are not being prescribed 25 or 50 µg of levothyroxine on a trial basis to see what happens to your symptoms and your blood results.....it could be that this may normalise everything. And sub clinical goes on to become more severe down the road in many cases. It’s only worth waiting a limited period to see if it’s a simple thyroiditis which could clear up by itself.
Overall, an endocrinologist should review all your signs and symptoms and help actually diagnose something and make a treatment plan.
The FT3 result - which was tested at the same time as all the others, was not included in the printout I got from the doctor. I only got the result via the receptionist who couldn't work out what the range was! I have requested it, but still waiting as yet. Which all makes me doubt that result. So what you say is interesting. Your suggestion of a trial is the one I'm working towards right now, and good to have someone understand my line of thought. I do hope that the endo - who I'm due to see - will, as you say, review and work out a plan.
Thank you so much for your input - it is so helpful.
You can have a private home blood draw - if you wish - and I'll give you a link of private labs who will send you the appropriate things you need.
Make sure arms/hands are warm when drawing blood (they are finger-tip blood draw) so it is easier but they can make an arrangement if you wish to draw blood.
Thank you for your reply. Is private blood testing likely to come back significantly different from the tests I've had already? Or perhaps I'm missing the point?
GPs usually only check the TSH (thyroid stimulating hormone). None of the 'experts' I went to never did that test but were willing to prescribe for something I didn't really have as I was very hypothyroid but none tested for this autoimmune disease. I diagnosed myself, eventually, after undergoing an operation to 'remove a web' which I never had (I realised once diagnosed as hypo that the 'web' must have been a swollen thyroid gland).
Hello, and thank you for your reply. What a shocking story. I am so sorry you had to deal with that.
In my case the GP has (under pressure from me) done all the thyroid blood tests + vitamins etc except the Tg. But in spite of my symptoms and family history, my 'within normal range' blood results seem to be the end of the story. And perhaps they are the end of the story. But I think that the test ranges are too wide and they vary too much from lab to lab for me to be certain that I DON'T have a thyroid problem. While there is some overlap of symptoms that appear in several diseases, my symptoms are for the most part very specific to hypothyoidism. I was diagnosed by Dr Durrant-Peatfield as hypo many years ago - but no other doctor agrees, it seems. I have been 'treated' by endless doctors for this symptom or that symptom - without success. I think that is because they are not addressing the cause of the symptoms and looking at them as a whole. But am I wrong? I just don't know.
Thank you again. I do hope that your health is now stable and that life is good.
Hi. Thanks for replying. It helps when someone agrees with you, as it gives you a hope that maybe you're on the right track. I wish this wasn't a common problem, though.
We always recommend getting FULL Thyroid and vitamin testing BEFORE seeing any thyroid specialist endocrinologist
Is this endo one from Thyroid UK recommended list?
Email Dionne at Thyroid UK if not got list
tukadmin@thyroiduk.org
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
Ask GP to test vitamin levels
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 .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you for your input. I have had all the tests you mention with the exception of Tg, which the doctor seems reluctant to test. I take it that a Tg test is vital. But, and I'm sure I am missing the obvious, might I have a thyroid problem? Or just a B12, Vit D, Iron deficiency?
There could well be an underlying reason for B12, Vit D and iron issues - don't write those off as 'just' - they are serious, and need to be considered thus. You may of course also have a thyroid problem, but without getting your vitamins and minerals optimal and your gut working well (so that you can actually absorb the supplements, or nutrients from food) how will you know. Best to look at overall function, gut and liver first, including a check for Coeliac if possible. I recommend Datis Kharrazian's 'Why do I still have thyroid symptoms when my lab tests are normal' for an overview of what else may be affecting function and can be addressed. Thyroid medication isn't always the answer for everyone. Dr P addressed some of these issues in his book, too. Lovely man, I also had the pleasure of being diagnosed by him, in 2017. Best wishes
Thank you - another thoughtful and helpful reply. I have had a coeliac check up - negative result. I will certainly get and read Datis Kharrazian book - sounds like it was written for me. I have book/letters from Dr P which I will look at again.( He was adamant that I should be on Armour, incidentally, and I certainly trusted him.) The gut and absorption is something I have been trying to learn more about recently. I have an endo appointment coming up, and I don't want to be blind-sided by some nonsense that is in fact a brush-off. On the other hand, I can't fight my corner if I'm not sure of my facts.
My pleasure and I hope the endo is a good one. Coeliac testing is notoriously poor, so please don't assume you are ok, especially if you have symptoms.
Your FT4 is near the bottom of its range and FT3 apparently in the middle. The FT4/FT3 ratio indicates how you are converting T4 to T3. From the ratio (less than 2/1) combined with your "struggling but normal" TSH I would think that you are on edge of overt hypothyroidism. A low ratio with low FT4 and normal FT3 is a good indicator of this, because it suggests your thyroid (T4 output) is struggling, but your body and thyroid together are still maintaining a normal FT3. The body does this by a combination of an uplift in T3 production direct from the thyroid together with good conversion of whatever T4 there is by the body in general.
Thank you. That is such a clear explanation of what could be happening. So clear in fact, that I have just written it down. I feel certain that I have some kind of thyroid malfunction, but none of the blood tests bore that out. I can see that it is more nuanced and complex. But not difficult to understand when explained well.
Thank you for taking the time to reply - you have made the picture much clearer for me.
noquitter
Sorry I've only just seen this. What time of day was you blood taken? To get an accurate result for cortisol it needs to be done between 8-9am.
Cortisol 214 (185-624 nmol/L) If this was a done between 809am then it is on the low side, cortisol should be at the top of the range first thing in the morning & then slowly drops. Any result under 400nmol/Ls needs further investigation by an Endo experienced with pituitary/adrenal issues as not all of them are. You would need a short synacthen test to see how you respond to the artificial ACTH they inject you with. After 30mins it should reach at least 450nmol/Ls, however they should also do a base line ACTH blood test, this needs to go on ice straight away. If it stays low then you could have adrenal insufficiency, Addison's is primary & is n autoimmune condition & due to the adrenal glands not working, however it could be due to the pituitary gland not stimulating the adrenal glands to produce cortisol.
Hi. This blood test was taken at 8.50am (fasting) so, from what you say, the cortisol is low and needs checking out. Adrenal issues have figured in my mind for some time, so good to have another - impartial - view on this. It's a huge help.
It is on the low side then, be warned some doctors aren't always conversant with pituitary/adrenal issues so they may try & say that your levels are okay, however the NICE guidelines say that anything under 400nmol/Ls should be investigated. It could account for how you are feeling. I have secondary adrenal insufficiency due to the removal of a pituitary tumour. Happy to help further if I can.
My sister has a pituitary tumour. So your comment was very relevant - to her and to me. And my brother in law had one removed 2 years ago. So it was something that was on my radar. I brought it up with my GP - I might as well have been talking Swahili!
I'm very grateful for your 'reply'.
noquitter
Although they say that pituitary tumours don't run in the family, there is evidence to say that they can, so it would certainly be worth getting it checked out.
If low folate, then you cannot use the b12 that you have. They work together. Optimal folate is in the top quarter of the range so yours is really low.
In my experience, most GPs are not knowledgeable about b12 issues.
Thank you. I have just started taking folate. The doctor wasn't too bothered about it! I really do wonder what, if anything, the GPs actually know. Thank goodness there are knowledgeable people here - and elsewhere - who can help. But it really is a scandal that we get so little health care, and if and when I can get myself fixed, I intend to investigate this further. This situation is not acceptable!. I have already started writing to all and sundry (next one to Dept of Health) . The replies I have got so far have all been on the lines of 'not our brief'. Well, it's someone's brief!
Sorry for the mini rant, and thank you for taking the time to reply and for the info. I do hope that your health/situation is good.
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