I have felt hypothyroid for years (particularly more so after having my last child at 44) but doctors locally have successively denied my symptoms as my labs have been in range according to their tests and ranges (they only ever test TSH, I have requested T4 and T3 but have been denied this multiple times) (tests have not included by the way T4, T3, RT3 or TPO Antibodies).
So I am at a loss as I feel awful and cannot find a practitioner who understands let alone will test me correctly and adequately or even prescribe any medication. I am not on any thyroid medication for this and have not taken any ever as I have never had a diagnosis or permission to a diagnosis.
As a result I have felt guided by myself to navigate through this with the help of one individual.
I think my latest lab ranges speak for themselves and highlight the need for thyroid medication/treatment:
TSH 4.72 (0.27 - 4.20) out of range
FREE T4 13.7 (12.0 - 22.0)
FREE T3 3.7 (3.1 - 6.8) very, very low
T4 TOTAL 88.3 (66 - 181)
ANTI THYROGLOBULIN ABS 32.2 <34
ANTI-THYROIDPEROXIDASE ABS 32.2 <34
REVERSE T3 16.0 (10.0 - 24.0) too high
REVERSE T3 RATIO 0.23
I take all the necessary cofactors for my health and health of my thyroid:
multivitamin and mineral, vitamin b complex, vitamin b12, vitamin C, vitamin D3, magnesium, selenium, omega 3 fish oil, co-enzyme Q10, probiotics, zinc
I am gluten, egg, meat and diary free and avoid most nightshades too.
Any help to point me in the right direction would be great in finding treatment as I am struggling mentally and physically with this. I am based in Worcestershire, UK. Please PRIVATE MESSAGE ME with any advice that I would find useful.
Hope I can find some light at the end of the tunnel!!!
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Thyropausal
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Even without iodine, a multi-vit is a very, very bad idea: poor quality ingredients, not enough of anything to combat a true deficiency, etc. etc. etc. Not worth the money you pay for it. But, also, if it contains iron, that will block absorption of most of the other ingredients. Iron should be taken at least two hours away from everything except vit D.
Your diet sounds very restricted. Is it really necessary to cut out so much? Do you feel any better for cutting out all those food groups? It you don't, there's not much point, because it's not going to help your thyroid because pretty certain you have Hashi's, even though your result is just within the range. Antibodies fluctuate all the time so they more than likely go over-range at times. And the Hashi's will be slowly destroying your thyroid no matter what you cut out of your diet. There's nothing you can do about it. Doctors just don't understand antibodies.
Absolutely no point in testing rT3. It doesn't give you any useful information. There are many, many causes of high rT3 and only one of them has anything to do with thyroid. And that is when your FT4 is too high. Your FT4 is right at the bottom of the range so not likely to be converting to excess rT3.
In any case, the high rT3 is not a problem in itself. It's inert and only stays in the system for about 2 hours before it is converted into T2. And it doesn't block T3 receptors as used to be thought, it has its own receptors.
But you are hypo. A TSH over 3 is technically hypo, and in some countries you would be treated at that level. The problem is the ignorance of the NHS who like your TSH to go over 10 before they will diagnose, and refuse to believe that you can have symptoms before that!
What's more, it rather looks like you have a sluggish pituitary. As I'm sure you know, TSH is a pituitary hormone (not even a thyroid hormone!). When the pituitary senses there is not enough thyroid hormone in the blood, it increases production of TSH to stimulate the thyroid to make more thyroid hormone. And with such low Frees, one would expect the TSH to be much higher. So, your pituitary is not working to full capacity. And, as the TSH is all docctors tend to look at, believing that it 'tells them all they need to know'! (The biggest lie in medical history!) Your TSH above is slightly out of range? Have you had other blood tests with an out-of-range TSH? Because if you have two consecutive out-of-range TSHs, about three months apart, plus high antibodies, you should be able to get a diagnosis, according to NICE. So, don't give up on the testing.
Appreciate this and feel you are 💯 right, thank you so much it backs up what I was originally thinking plus I find it so restrictive and totally demotivating taking the enjoyment out of life!
This happened to me after I had a baby. I felt terrible for years, and my family suffered. Go to your GP, tell him/her you can not go on like this as you have a young family. Go over the figures and quote the Nice guidelines which no doubt someone on here can tell you where to find. Be prepared to stand your ground. Take someone with you if necessary.
Ahh thank you, I will try and last time I did go with my partner I was outright refused as the doctor said he would decide if I had issues or not and did not take too kindly to me telling him I did. It just feels like a big stumbling block for me and makes me feel despair and hopeless of ever getting any help but I am going to keep on trying they will back burner it as usual and say more tests, wait 3 more months when I know the issue is evident and progessing
Ah the fragile ego of doctors. Some of the best consultations I have had have been with open minded ( and ego free) doctors who actually welcome suggestions.
Lets be honest its detective work being a doctor, someone comes in with a list of symptoms, often vague or ones that are common to hundreds of different conditions. And its your job to find out the cause.
A good doctor should welcome patient input and ideas. With the advent of Dr Google many of us have looked online and used symptom trackers so have some idea of what it could be. We know how we feel, they dont. I've also found writing a letter or an email before the consultation very helpful.
Detail all your symptoms, test results, the impact it is having on you. It can then be put in your notes. Letters are harder to ignore than phone calls and we've all had consultations where we've kicked ourselves afterwards for forgetting things. Its easy to get flustered and anxious, especially when you are battling to get treatment.
We are partners in our care, the days of a doctor being this paternalistic figure who knows best lecturing a patient who meekly sits there about what it is and isnt, with a side order of condescension, are over. Maybe someone should send this doctor the memo.
As Greygoose says the NHS protocol is normally two over range TSH tests roughly 3 months apart. If you get a second over range test, plus the fact you have raised antibodies and symptoms ( emphasise the last bit) then they should offer you Levo. And maybe see a different doctor, one who isnt so up himself.
You seem well informed and aware that you likely need thyroid medication. You GP is.... Anyway you need to find a doctor locally, online anywhere that will take you seriously and trial thyroid medication to see if it helps you.
I really sympathise. I too was in a similar situation for many years. I finally resolved it by seeing an Endo privately. His report to my GP was a thinly veiled rebuke but thankfully she accepted the diagnosis and his instructions on how to proceed. This included an ultrasound scan which revealed suspicious nodules - she had never even examined my neck! Anyway I really hope you will be able to resolve your situation. Good luck!
continue to pester your GP for a retest (usually 3 months after last one, they are unlikely to agree to retest sooner than this unless TSH is significantly higher than yours is)
Your negative antibodies won't help unfortunately, so no point sharing those private TPOab resulst with your GP, if they don't have a TPOab result they may test it for themselves and the result may well be higher ..... but you do have symptoms , and antibodies are not an absolute requirement for starting treatment according to these guidelines.
When TSH is over the lab range but fT4 is still within range, this is termed 'subclinical hypothyroidism' .
These are the current NHS guidelines for GP's on follow up /considering whether to start levo for people with subclinical hypo results :
"Tests for people with confirmed subclinical hypothyroidism
Adults
1.5.1
Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.
Treating subclinical hypothyroidism
1.5.2
When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.
Adults
1.5.3
Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
1.5.4
Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
symptoms of hypothyroidism.
if symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."
I really sympathise with you. I've been through exactly the same. Gp at time was disgusting and was happy to let me be bedridden. Even dismissed a vitamin d result of 11 as normal, no action needed so shows how little he knew.My husband would come to appointments, partly as I could no longer drive and support me walking as the severe chronic fatigue was that bad.
It wasn't until I saw private endocrinologist who is old school and throughly examined me physically not like what gp's or consultants do today.
All my vitals were low, hr, breathing rate, felt my body to feel skin temp, tested my ankle reflexes (woltmans sign)
My tsh after 8 years of nhs and private testing had just gone over range.
What absolutely nailed it for me to be diagnosed was my ankle reflexes. They were very slow considering my my tsh results. This showed I was very hypothyroid along with all the other physical signs that a consultant can physically see and test.
When finding a private endocrinologist it's worth asking if they just go off blood results or whether they physically exam too. I feel these kind of endocrinologist are few and far between these days.
Don't give up, do medichecks or other private bloods for tsh, ft4 and ft3 so you have you records. Good luck, I hope you are diagnosed and start on meds soon.
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