Can anyone help me in the direction of getting a clinical diagnosis for hypothyroidism, I live in Worcestershire UK. I have been to my local doctors presented them with private blood tests to confirm hypothyroidism yet they fail to diagnose it only offering more blood tests on NHS ranges that are completely out of range for a diagnosis so that they can then refuse me treatment the only alternative to my symptoms being a referral to medicine. I am completely at my wits end with this and feel totally helpless as I know and have ranges that 100% confirm hypothyroidism. How do I get off first base and get things rolling in terms of a diagnosis and medication. Any help/advice would be welcomed and appreciated.
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
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Thyropausal
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Do you have the results of your private blood tests ( complete with ranges) to share with us so we can see what's going on? Some GP's can be very sniffy about private blood tests, others are more accommodating.
Thanks for that, what happens when you have theblood tests done via NHS? Are these numbers replicated?
On the forum we advise getting a fasting ( water only) blood test before 9am. This gives the highest TSH value, which is what you want if trying to get diagnosed or avoid a dose decrease. Is this how you've been performing your tests, NHS and private?
Hi read the NICE guidance and use that. It talks to out of range (TSH) and from memory no longer mentions a TSH 10. The guidance allows GP to treat once out of range and trial levo. Check TUK site to see what it says too. The guidance can be found under thyroid disorders.
I’m over the border in Hereford, my GP ran tests 12 weeks apart in 2021 and I got a 4.8 and a 5.5 TSH range 0.27-4.8. Diagnosed sub clinical (FT4 and FT3 just in range)
Looks to me like your GP needs to run two tests for you too. (And to update their knowledge)
Keep a symptom diary, ask for antibody and vitamin testing ( or self test).
Keep going back, ideally see a locum, they seem to have wider experience.
I only get a blood test when they can fit me in usually 10.30 fasted the earliest plus my doctor thinks these results reflect subclinical hypothyroidism
Well technically they do. SC is when TSH is under 10 and when both FT4 and FT3 are in range. Getting diagnosed is a bit of a lottery on the NHS unfortunately.
Some GP's will treat if you have high antibodies, some will treat if your frees are below range, some will treat if you have two over range TSH tests 3 months apart. But some wont budge unless you have a TSH of 10 or over.
Has your GP offered to test you again in a few months time?
Still awaiting recent blood test results but the only alternative she offered after me telling her I am symptomatic was a referral to medicine which I didn't understand seems to lose the thread of a problem to another department altogether
It strikes me the NHS are now very reluctant to commit to a diagnosis despite being presented with glaringly obvious evidence....medics seem to have lost confidence in their ability to sum up the symptoms along the test results to make a decision.
"Wait and See" is a phrase I often hear now, I'm experiencing this re a chronic UTI which has been ongoing for over 10 years. Madness.
Your labs very clearly show hypothyroidism...the Frees are abysmally low.
FT4 13.7 (12 - 22) Result is 17% through the reference range
FT3 3.7 ( 3.1 - 6.8) Result is 16.22% through the reference rangr
We aim to have both Frees roughly approaching 75% through the reference range but despite the caveat that we are all different there can be no doubt that you are hypothyroid and need replacement thyroid hormone....
starting dose 50mcg levothyroxine daily, tested again after 6 weeks then dose increased to 75mcg. Wait 6 weeks and test again, the results will indicate need for further dose increases. Post labs here for advice.
I'd be inclined to discuss this with your Practice Manager and express your concern that although you are symptomatic and have evidence of low hormone levels you are being left with neither a diagnosis nor appropriate treatment.
What is a "referral to medicine"? Sounds like passing the buck to me!
Current diagnosis of thyroid disease is a monumental mess.
Thank you this is so encouraging I have a myriad of symptoms as long as my arm but they don't ever seem to count!!! I will persist with another doctor consult and great advice to speak with the practice manager 👍 maybe I will just have to try one doctor/practice after another until I get lucky 🤞
You have my sympathy.....it took me nearly 40 years from age 29, and possibly from birth, to get to the bottom of my gradually failing health, until I could barely function....in the end I had to do it myself with support from here. Medics were clueless. Turned out I have a form of Thyroid Hormone Resistance.
Symptoms/clues are vitally important, yet so often misunderstood and sidelined. Low (cellular) T3 can affect any, or all parts of the body
Persist....it's a straight forward case of hypothyroidism. This is about you, your body and how you feel, not about vague guidelines.
This GP is showing her ignorance, and now fears that is showing ...so she wants you out the door. The old doctors could probably have diagnosed you by watching you as you walked into the surgery!
But, I'm aged 79 and remember that level of competence!
Than you, you are so kind I have limited funds to go privately but if I have to I will, I have 2 young children and I need to keep my health to be able to look after them and get back to a better version of myself
I'm so sorry you are struggling, I would change practice and see what new gp says,it'll be a start if new gp recognises your condition and prescribes necessary medication, id keep the fact away from gp regarding self sourcing private bloods,sometimes its better to allow gp to make up their mind, 'unaided', if no joy go private who works alongside nhs....I did and I'm feeling much better, the money spent was well worth it. Took a while and help from this forum was invaluable ,good luck and keep up the fight
Hi DippyDame. Apologies if I've got this wrong but my experience is that GPs won't diagnose a patient hypothyroid because the levels are low. The figures here are in range at the moment and that's the key factor (for them). They just say 'normal'! If already on thyroxine I suppose Drs would want to tweak your dose with those figures but I haven't heard of anyone being prescribed levo with those sorts of numbers. I'm not as knowledgeable as some on this site but I do know the Drs I've experienced wouldnt want to start treatment until absolutely sure. Eg out of range results on more than one test. Is that not so?
Being "in range" is no guarantee of adequate thyroid hormone replacement....and it has been postulated that reference ranges are too wide in any case.
"Normal" is not a clinical diagnosis, it's an opinion....and a poor one at that!
but I do know the Drs I've experienced wouldnt want to start treatment until absolutely sure.
Absolutely sure of what?
Human beings are not like machines that roll off a production line all having been calibrated to set points ...which is what modern diagnoses resembles.
We are all different with sometimes very different needs, and these needs, in thyroid treatment, will not necessarily conform to a list of numbers alone. Symptoms are key!
Are you suggesting, for example, that FT3 at 3.7 (3.1 - 6.8) is a satisfactory result because it sits in the reference range but FT3 at 3 ( 3.1 -6.8) would suggest hypothyroidism, being outwith the range.
but my experience is that GPs won't diagnose a patient hypothyroid because the levels are low
Well, they should!
When results are as low as 17% through the reference range as is FT4 in the example above the patient is badly hypothyroid.
but I haven't heard of anyone being prescribed levo with those sorts of numbers
Well, that is most likely the reason so many patients arrive here strugging with ill health due to lack of a correct diagnosis and/or or adequate treatment
This inability to analyse lab results, and to understand reference ranges, is causing misery for very many patients who like Thyropausal are struggling to be correctly diagnosed
the Drs I've experienced wouldnt want to start treatment until absolutely sure. Eg out of range results on more than one test. Is that not so?
It's not about being in or out of the range, it's about the patient's result sitting at the point in the range where they feel well....and medics understanding this
Based on your understanding Thyroidpausal should be symptom free and in good health and requiring no medication because her Frees sit just inside the reference range......
Yet, she says, I have a myriad of symptoms as long as my arm but they don't ever seem to count!!
Change must happen if thyroid patients are to receive improved diagnoses and treatments and that must start in med schools if we are to have any hope of better informed doctors....and patients.
Well said! Til that happens (😱) we continue to get the advice and support from here, educate ourselves+don't let em wear us down to oblivion (as many of em would love so we don't moither them again!). Get a fresh load of air in our lungs and onto the ramparts again!! 😵💫
The OP has a TSH slightly over range so using NHS guidelines they should offer her a repeat blood test in 3 months. You can bet if she had a slightly over range cholesterol test they'd be falling over themselves to offer statins.
If the results are similar then you have several options, you can ask for them to be retested in 3 months again, you could try and see a different GP within the practice and see if they are more sympathetic. Some are more flexible about things than others.
I honestly dont see much point in asking for an Endo referral on NHS, its likely to be refused and the Endo will probably sing from the same hymn book anyway ( TSH only slightly elevated, no raised antibodies blah blah).
You could either seek out a reputable private Endo or private GP. The other prescriber who would be cheaper is Roseway labs, a compounding pharmacy in London, who can prescribe thyroid meds with their pharmacist prescriber.
I use them myself for non thyroid meds and they are reasonably priced compared to private Endo and are excellent. You can book with their prescriber and pay for the consult. Its normally a Wednesday afternoon phone consult.
They will need recent thyroid blood tests submitted before the consult. The private prescription cost is included so you just pay for the meds, if they prescribe.
The other route is to ask on the forum for sources of Levothyroxine and buy your own. Its not illegal to buy meds for personal use and Levo isnt expensive. However there are caveats, make sure the source is reputable, we do unfortunately get scammers preying on desperate people. You can check with the admins for feedback before parting with any money.
Buying your own meds has advantages but you are at the mercy of global supply issues and because you are usually buying from abroad obviously you can get postal delays or hold ups.
And if this or using Roseway Labs is the route you go down it could make getting diagnosed on NHS in the future much more difficult, as you will already be on medication so your TSH is unlikely to be high enough to get treatment. So its a decision to mull over because obviously its far more desirable to get Levothyroxine for free on the NHS.
I guess it boils down to ongoing costs, availability of meds, how desperate you are and how likely it is that at some point you'll be hypo enough for the NHS to treat. Your TSH could continue to rise, we've had members with a TSH of 100, your antibodies could also rise, your frees could both drop below range.
But they might not, you might be someone who has a TSH under 5 for years. Or it could even return to normal range. It could go either way. I'm sorry its not more positive but I wanted to be honest with you. I know the frustration of waiting 3 months for TSH to rise enough.
Its a buck passing strategy, gets you out of the door, fools you into thinking there is some sort treatment or diagnosis plan in mind. Knowing how long NHS waiting lists are she's probably hoping you'll give up or go private.
In essence stop being her problem. Plus medicine are very likely to refuse the referral anyway.
I see two ways out of this, either politely insist you want thyroid bloods again 3 months from when you had the last ones done on NHS as this will show if thyroid continues to struggle.
Or go private but research your Endo/ private GP very carefully. Just because you are paying doesnt mean you'll definitely get treated. A lot of Endos are diabetes specialists and dont know much about thyroid. Ask around or ask for recommendations via PM.
Yes she is hoping that she was not happy with me at all and I could tell I was proving to be problematic for her as after telling her my symptoms she mentioned sleep and iron levels which I proved to her were optimal it's a blatant refusal to diagnose
For years my TSH was high and very very high antibodies, all my gp would say was at some point my thyroid would be underactive And it had to get to 10 on a blood test, at about 8.8 I'd had enough and literally begged my gp to start me on medication, he did agree .Can you see a different gp.
You can ask for local hospital blood tests and see if they have earlier appointments, your receptionist should be able to give you that info if your gp has allowed a blood test.
Current NHS guidelines for when to start treating sub-clinical hypothyroidism (this is what t results are classed as when TSH is over range , but fT4 / fT3 are still in range) :
at the very least , you will need 2 NHS test that have over range TSH to get the ball rolling ...
(note : TSH will be a little bit higher at 8 am , than it is at 10/11 am ... it is at it lowest around 1-3pm , then rises again to highest in the early hours of the morning. however as NHS ranges are based on daytime samples there's no point testing at 3 am to try and get a diagnosis cos you'll never get NHS results to match )
GP will want the two tests need to be about 3 months apart ....
(to rule out a transient rise in TSH from some unrelated cause).
then if symptoms of hypothyroidism are causing problems ,they "can consider" trying you on levo. It's rather dependant on the individual GP's opinion ... a positive TPOab result would make a much stronger case for starting treatment while sub-clinical, but yours are not currently positive... worth keeping an eye on them though , they may well go up.
"1.5 Managing and monitoring subclinical hypothyroidism
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."
Hi. I was wondering what your symptoms are exactly as you don't say? Does your Dr have an explanation for them if you are feeling ill and he doesn't agree it's a thyroid problem? Not everything is a thyroid problem of course even if it presents as such. My TSH and T4 were borderline out of range for quite a while with high antibodies which I suspected would eventually destroy my thyroid. Then my TSH shot into the 00s during lockdown and I was very very ill with all the classic severely hypothyroid symptoms and couldn't get to see a Dr who would have known by just looking at me that I was definitely ill at that point. Has your Dr discussed your symptoms?
Symptoms: dry skin and hair, hair loss, constantly feel cold, low bp, fatigue. My doctor won't discuss really my symptoms or investigate them she just says 'something else' could be causing them and thats all I get from her!!
I’ve been struggling from identical experiences for best part of twenty years or more , I really feel that I’m now nearing the end of my tether after being treated like my symptoms are “all in my head “ and left on a starter dose of Levothyroxine all this time
I suppose you are fortunate she hasnt gone down the depression/ anxiety or Chronic Fatigue route, which many hypo patients get fobbed off with. I'd be pressing her on what the ' something else' is that she thinks you have.
Having high B12 is not a problem. B12 isn't poisonous. If you are supplementing, the worst thing you can say about having high B12 is that you are wasting money.
Your over range TSH plus symptoms show you are hypothyroid. That you are just within the population reference range isn't relevant. Where is your normal personal and individual reference range? See attachment.
Not treating hypothyroidism has serious consequences - emphasise that to your doctor. It affects your heart, kidney, brain and the list goes on.
Maybe take a print out of the attachment to your next appointment and explain that some people sit higher in the population reference range and that being at the bottom with high TSH and symptoms means they are hypothyroid. And I haven't even mentioned your antibodies...
I do sympathise with you. My current GP practice tells me similar results are ‘excellent’ and I was diagnosed over sixty years ago and bern on replacement therapy since diagnosis. I finally had an endo referral a couple of years ago and the sat and show boated in front of students and told me a pack of lies. My saving grace was his belief that ndt was the equivalent of snake oil so agreed to tell my GO he was happy for me to take it in addition to levo.
A friend of mine recently struggled to get a diagnosis until she discussed early menopause at which point she had full bloods at 8:30, TSH suitably high and subsequent diagnosis. Previously they had put symptoms down to being menopausal or newly post menopause she had to point out that it’s unusual to be post menopause in mid/ late forties. Could this apply to you?
I can so relate to your problem. I never did get diagnosed by the Nhs, having seen 3 GP's and 2 Endos and having thrown every I had at it. It drove me to distraction and it's so hard when you're ill. I went to a private doctor in the end and although initially it was costly, it has been worth it. I now connect with my doctor by email twice a year - more often and by video link if I want to - and she prescribes the meds. The cost is do-able if not desirable, and it's morally wrong. But life is just too short, so I bit the bullet.
That was 3 years ago, and I'm not perfect - yet - but so much better.
Good luck. I hope you get a diagnosis and treatment via the Nhs, as you should.
Tell them you are American. They start treatment at a TSH over 5. We are, of course, a different species! It is rediculous and so frustrating.
Next time you see the GP, ask why they want to keep you ill. Tell them your results would be different if they did an early blood test as the thyroid is cyclical, and ask them to prove you wrong! Sending a hug.
I would imagine that an NHS GP has to use the system they’re employed in. You have been offered an NHS test, the rest should follow. When I got a diagnosis I just asked for tests to be done as I showed a few symptoms that I recognised from my late mother’s hypothyroidism. I was given the tests I asked for. Even though I was sub clinical I was prescribed medication, the doctor was attentive to how I feel not just the blood “numbers.” I don’t know why so many people seem to have problems with getting diagnosed but in my experience it was a very straightforward process. Just get the recommended tests, get into the NHS system and take it from there.
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