I’ve become an avid reader of this forum, these last months - and this is my first post. May I ask for your sage advice, please, on my blood test results, as below.
My symptoms have developed slowly - practically unnoticed - for years, perhaps triggered by the birth of my second child in 2015. Fatigue, hair loss, joint pain/stiffness, constipation, dry/sensitive skin, slow thoughts, anxiety, chipping teeth, hoarseness, pulsatile tinnitus, extreme itchiness/sensitivity around my neck and jaw, stretching up to behind my ears - and skin rashes, which have cleared since following a gluten-free diet over lockdown.
I believe that these symptoms are interconnected – part of a wider expression that something is off-balance in my body.
Hypothyroidism (or Subclinical Hypothyroidism) seems to me to be the most obvious explanation. But as I read the results of my recent blood tests, the numbers are seemingly within range and do not appear to point in that direction.
For your information, I am a 45 year old woman. I am not taking any medication of any kind. For the last 5 months, I’ve been following a plant-based diet, free of meat, eggs, dairy and gluten.
Following the wisdom of this forum, I stopped taking all supplements for 14 days prior to testing, in order to gauge a ‘true’ result. And my tests were taken in the early morning at 07:50 and 07:30 respectively, following overnight fasting.
In honesty, I had hoped that the test results would validate/legitimize my symptoms - and provide clarity for a hypothyroid diagnosis. But instead, they have raised a question mark, as to whether I’m even looking in the right direction.
I would be most grateful for any and all wisdom from this community, as currently I feel adrift.
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In many countries you would be treated when your TSH gets past 3 ... which yours is. But the NHS, in its wisdom, won't even treat you if you go out of rage. You will have to be waaay over range first - at which point you are likely to feel really ill.
I'm so sorry.
Best thing is to repeat the tests every now and then - until they go up. And if you have a sympathetic GP say that you are concerned that you are "borderline" hypo, and at what point would they agree to give you a trial of levo?
Thank you for your kindness in commenting, fuchsia-pink. I’m already steeling myself for my next conversation with my GP.
Yes, I've been waiting-and-seeing for 4 years, riding out the symptoms. During this time, my TSH levels have been slowly climbing, just making it out-of-range at 4.35 in February 2020, before lockdown.
But now, six months later, my TSH levels - for some reason - have improved at 3.86, although my symptoms are heightened/worsened.
And my FT4 level has always been stable, towards the lower end of the spectrum at 13.1 (in 2016), at 13.2 (Feb 2020), and now at 12.5 (Aug 2020).
It is a dire shame that doctors in general seem unprepared to accept the fact that those with similar blood results to yourself cannot be told the truth in accordance with the rules, written or otherwise, of their profession.
Unless you take action of your own, you are destined to spend a considerable time becoming ever unwell, until your TSH exceeds 10 and, even then, the treatment may be totally inadequate. You need treatment NOW, not in the distant future. I find this situation deplorable even when I have never been subject to this aspect of the UK's thyroid scandal.
The problem with taking your own action (buying the "drugs" yourself) is that you will never get your TSH above 10 and never be diagnosed as hypothyroid.
It is up to you what to do. In your situation, knowing what I now know, I would stick up 2 fingers to the NHS and make myself well.
One piece of information you should take into account is that, if untreated, your permanent health condition, after finally receiving NHS treatment, could be severely compromised. That is precisely what happened to me after 8 years of neglect by the NHS.
Keep reading the forums and keep querying your GP/endocrinologist if they fail to tell you the truth rather than tell you only what they are "allowed" to tell you.
Thank you, Panda321, for taking time to share this with me.
For weeks, I’ve been wondering about what on earth to do next, should my results be borderline. I feel emboldened by your tone - and shall continue reading the forums, researching the possibilities and querying the status quo - until I can find a way out from under this.
You’re definitely in the right direction as your tsh is elevated and your ft4 and ft3 is at the bottom of the range. Ft3 particularly so, so I can understand why you feel so rough.
You will have a tough time getting treated on the nhs though. My tsh was 6 and my ft4 below range and i said I was trying to conceive and the gp still wouldn’t treat me. Eventually went private (I know not everyone is able) and consultant gave me a prescription within 5 mins (because I needed it not because he was playing fast and loose!). Sorry if that sounds negative but I know it’s frustrating and better to get ready to do battle!
Your vitamins look low even though in range - folate and b12 especially And maybe ferritin - what’s the range for ferritin?. Vit d should ideally be around 100 or more. Do you supplement? Others on this forum can help more than me on the vitamin front. But getting those into the upper part of the ranges really can significantly help with thyroid function so it’s definitely worth doing that while you try to get your doctor to give you a trial of Levothyroxine. Good luck!! Definitely do persist though because it’s not fun to feel like you do all the time and it can get better
Thank you, Arlie123, for your reassurance that I’m looking in the right direction. Self-doubt has been creeping in, today, upon receiving my test results. I’ve been wondering if I’m mistaken in my own self-assessments and questioning whether to change tack - but to where?
Yes, I’ll continue to look into going private - from everything I’ve read, it sounds the most civilised and productive way of going about getting a diagnosis. May I ask, if you did wish to revert back to the NHS, at a later date - could you? Would the NHS accept the findings and opinion of the private doctor - and agree to continue your prescription?
Regarding supplements, apart from the fortnight prior to testing, I’ve been taking:
* Floravital Liquid Iron (iron, vitamins B1, B2, B6, B12 and C)
* Floradix Neuro Balance (with Ashwagandha, vitamins C and B12)
* Vitamin D - upon finding I was deficient in February with a result of 24 nmol/L [<25 nmol/L = deficient], the GP put me on a high dose of 20,000 IU for a couple months. And following that, I’ve been on 2,000 IU daily.
Regarding the ferritin result, my paperwork does not specify a range. But according to the Mayo Clinic, the typical ranges are: [20 to 200 ng/mL in women].
I’m not sure about the floradix or liquid iron but generally on here a good b complex is recommended - eg jarrow or igennus. Your b12 is on the low side as well as folate and ferritin so I’d recommend looking into that with specific supplements. Maybe you need to up vitamin d from 2,000 per day a little especially during lock down.
In terms of private endo, I have appointments with mine, he then writes to gp practice with what needs to be done and they write the prescription (no questions so far and I’ve been seeing him since January). The gp did agree to give me a referral though - maybe just because i wouldn’t let up. The only exception is I’m now trying T3 and as it’s difficult to get that on the nhs I buy that separately myself with a private prescription from endo. If you go down the private route ask here for recommendations (via pm) of thyroid friendly endocrinologists. Not all consultants are good. There is also a list you can get from thyroid UK which has recommendations. You can also ask your gp for a referral and then find a good nhs endo. I want to have babies and I’m quite old so couldn’t afford to wait.
You are so kind to share all this with me - thank you. And regarding having babies later in life’s journey, it’s a marvellous time to do it. I gave birth to my daughter at 37 years, and my son at 40 years - both at home (against doctor’s orders), in an inflatable birthing pool. Good for you, Arlie123, for going after what you want most. I wish you joy.
I was diagnosed by a private HRT specialist and started on Levothyroxine and my GP just continued it. No questions have ever been asked. I have a medical exemption now so don't have to pay for prescriptions. Good job as the NHS's dire thyroid treatment and understanding has caused me a lot of other health issues. I now do all my own blood tests. I'm about to add T3 to my Levo. I've had to buy that in, but Levo alone doesn't help me much.
Your ferritin needs to be around 80-90. You are making this and your B12 status worse by going plant based. I can't get my ferritin up high enough on supplements alone. I have to eat liver pate and black pudding regularly and eggs are full of B12.
I much appreciate you sharing your diagnosis story with me, FancyPants54 - a beautiful side-step around the NHS.
And yes, you’re correct, of course, that a plant-based diet creates its own difficulties in consuming foods with the desired vitamins. I made the decision to start a plant-based diet at the very beginning of lockdown, having realised that my symptoms - fatigue, hairloss, sensitive skin - paled into insignificance in the face of Covid19. As getting medication prescribed for me became an impossibility for the foreseeable future, changing my diet radically was the only course of action available.
Going cold-turkey, I crashed into an elimination diet, cutting out anything - meat, dairy, eggs, gluten - that could be causing inflammation. It was hard (especially finding a can of chickpeas on the empty supermarket shelves), but it worked. I believe I’ve discovered a gluten intolerance that was causing a skin rash and just for resolving that alone, I am grateful to the diet.
I hope to reintroduce some nutrient-rich foods to my diet, in time - including eggs and fish. And I do like liver pate, too, so thank you for reminding me of that! But for the interim, I’ll have to supplement as best I can.
Ridiculously they are wedded to treat by TSH when in fact TSH is not a thyroid hormone but a pituitary hormone which reacts to the rise and fall of the Frees.
The aim is not to have results in range but to have them optimal for the patient I e do you feel well. I bet your GP has never asked that question!
You are not a number!
YourFT3 (Thriva) 4.5 (3.1 - 6.8) is only 37.8% through the ref range....a long way from around 75%.
You are hypothyroid and you need to be given a trial of levo starting on 50mcg and tested after 6 weeks and increased by 25mcg.....increase and test until FT4 is 75% through range.
Your conversion appears to be fine so your FT3 should rise too.
Ensure vit D, vit B12, folate and ferritin are optimal
You need to push for medication asap....no wonder you feel unwell
Might be an idea to read this (link follows) and give it to your GP.....he certainly needs to understand things better....the authors are eminent in the field, so reliable.
If your GP still refuses to offer levo ask to be referred to a consultant....though many of them are diabetic specialists not thyroic specialists!
Sadly medics are very poorly educated in matters thyroid hence the hundreds of patients who are struggling with thyroid problems.
Many of us have resorted to self medication but this should not be necessary if your GP can be persuaded to offer you a levo trial ( ask for a trial, don't demand levo, it helps keep them on side!)
I'm not a medic just another patient who has had to learn in order to improve my failing health.
I am loving the percentages - thank you for those, DippyDame. May I ask please, did you calculate them by basic maths, or is there a chart or table published somewhere that I’m missing?!
As you say, it’s easy to become preoccupied with the dictates of the results ranges - whereas the focus should be whether the patient feels well.
And thank you for citing that document. I’ll forward it to my GP for her perusal - and keep my fingers crossed for a trial of levo.
I just want to say how angry I get every time I hear of someone in your position. How wicked the NHS is allowing you to feel ill when there is a simple remedy. I spent four years feeling ill before a locum discovered I was hypo (many years ago). Regular GPs never bothered to check. Now I have a very understanding GP. The proof of the pudding is in the eating. On extraordinary numbers, for several years, well out of range on TSH and T4, I feel very well. (normal T3). My GP is probably thankful I never have to visit the surgery for anything and couldn't care anymore what the numbers are, as long as I leave him peace. lol.
It’s four years for me, too, fiftyone - fighting the system and being told that my symptoms are due to: giving birth at the advanced age of 40, and an emotional response to the death of a parent. Yes, indeed, these incidents may have been triggers - but this does not negate that I present as a patient with hypothyroid symptoms, which need addressing.
In recent months, I, too, consider myself fortunate to have been taken on by an understanding GP at my local practice - and although she’s told me that she doesn’t think it’s a thyroid disorder, she’s keen to get to the bottom of it. I’m hopeful that with the wisdom provided by this community, I can persuade her - with evidential material - that these symptoms we’re chasing down, are the result of a thyroid disorder.
Your diet might explain why your B12 and ferritin are so low, and those being low might also explain symptoms. Your thyroid is struggling but not enough to be diagnosed. Getting B12 over 500 and ferritin to 70 will probably help. If you are eating soy-based foods, it might be worth swapping to hemp and chick peas instead (eg hemp-fu instead of tofu and hummus for extra protein) - soy tends to depress thyroid function. I'd like my vit D over 100 in Summer, too. If not eating any sea vegetables, I'd start doing so.
Thank you for this - the reference ranges are particularly helpful.
To confirm, I’ve not been eating any soy products, these past 5 months, whilst on this elimination diet - trying to cut away anything that might be causing inflammation.
Recently, I’ve been adding dulse seaweed and spirulina algae to my smoothies. And I hope to reintroduce some nutrient-rich foods to my diet, in time - including eggs and fish.
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