Hi everybody, seeking some advice. I have had 4 thyroid tests over the last year. All have me with TSH over 5 with the last at 6.1. Only 3 of the tests included T4 and T3 with the T3 being mid range and the T4 below range on 2 occasions. around the 10 pmol/L. level
The last test was done through my local GP at another lab and this had TSH at 6,1 and T4 at 10.1 just a smidgen inside the range (9.00 - 24.00)
My GP insists I am perfectly healthy as I am inside the range and no treatment is required. I told him that I have some symptoms of hypothyroidism particularly patchy hair, lethargy and appalling brain fog.
Out of curiosity I went to see a private specialist who insisted I would definitely benefit from treatment and wanted me to start a course of Armour Thyroid through them but this is absolutely not affordable for me especially as it will be for life.
Should the NHS not treat me at these levels?
Written by
hankpym
To view profiles and participate in discussions please or .
Welcome to our forum, and the majority of members are here due to the failure of the medical profession not knowing one clincal symptom and diagnosing due to blood tests alone with complete ignorance of how the patient 'feels', and symptoms can be quite disabling every single day.
If have a actual print-out your latest results with the ranges, you can post. If not ask for one from the surgery and put up a fresh post. Make sure ranges are stated otherwise members will have difficulties. Also we get the best results (for us the patient) if we have the very earliest appointment, fasting (you can drink water) and if you were taking thyroid hormone replacements you'd allow a gap of 24 hours between the last dose and the test and take afterwards.
We don't get adequate blood tests. It was much better before the blood tests and levothyroxine were introduced at the same time. These have now overtaken the skill of doctors who knew all clinical symptoms and gave us prescription for NDTs.
We have stepped back in time, it would seem.
In other countries, we would be diagnosed if TSH goes above 3. This is not from the thyroid gland but the pituitary gland which tries to flag the thyroid gland to produce more of the necessary hormones.
When you read the following links - you will probably realise why some resort to self-medicating.
Your GP may not be willing to prescribe until the TSH is 10 so that's why some members source their own levothyroxine. It is not against the law to do so for personal use.
A Full Thyroid Function Test should be:-
TSH, T4, t3, Free T4, Free T3 and thyroid antibodies. Antibodies are important as 'regardless of the TSH number' should be prescribed if they are present.
The tests the doctor will not do, you can get a private home pin-prick blood test, following the guide above for the best results. If you decide on a private test, make sure you are well hydrated a couple of days before and that hands/arms are warm as they are finger pinprick tests. The labs are Blue Horizon and Medichecks. Medichecks have some
special offer every Thursday.
Your GP should test B12, Vit D, iron, ferritin and folate as well as deficiencies in these also can cause symptoms.
Post your results with the ranges as stated and you will get responses.
Unfortunately there is a difference to what seems sensible and would make GB patients feel better, and what various guidelines suggest - subclinical hypothyroidism which is how your results would be described does not get levothyroxin treatment till TSH reaches 10. In other countries a TSH of 3 warrants treatment. Won't your specialist at least start you on levothyroxin instead of Armour? You could go down DIY route of buying abroad, like many of us have too. Also worth seeing what you can do to help your poor thyroid health with various tests your Gp is unlikely to do: do you know if you have either of 2 autoimmune antibodies ( TgAb or TPO) or Hashimoto's disease? If you are positive then gluten free diet helps some. Have you had your Vit D, b12, folate and ferritin tested - need to be optimum in upper end of ranges? Many of us get private lab tests thru Medichecks or Blue Horizon.
Subclinical can be treated if the GP would like to read the NICE Clinical Knowledge Summary, and as your FT4 has been below range on 2 occasions I think you should have been started on Levo.
If TSH is between 4 and 10 mU/L and FT4 is within the normal range
◾In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4and assess response to treatment 3–4 months after TSH stabilises within the reference range — see the section on Prescribing information for further information on initiation and titration of LT4. If there is no improvement in symptoms, stop LT4.
◾In older people (especially those aged over 80 years), follow a 'watch and wait' strategy, generally avoiding hormonal treatment. If a decision is made to treat, prescribe LT4 and recheck TSH two months after starting and adjust the dose accordingly.
◾In asymptomatic people, observe and repeat thyroid function tests (TFTs) in 6 months.
Your private specialist is right. However, could he not contact your GP with his opinion and suggest Levo is prescribed? Or rather than use Armour, which is the most expensive of the Natural Desiccated Thyroid (NDT) brands, there are perfectly acceptable alternatives that many members here use which comes from Thailand at much lower cost than Armour.
my Vitamin D and B12 are fine now but I supplement quite heavily with them to get them into range as they were low a year ago. My Ferritin, folate and Iron are all very low and I am trying to supplement them now with Iron tablets.
I think the private practice try to keep you under their care as they supply the prescriptions undoubtedly with a healthy surcharge for them.
I will wait till next Thursday to buy a Medichecks Thyroid test with antibodies so I know exactly where I stand.
I am starting to think that if it is not illegal to source this stuff yourself then I might just try to do that at least for a trial to see if it offers any benefit - I am not sure if I have the patience to keep dealing with the NHS doctors.
Getting full private testing of thyroid and vitamin levels is first step.
Low vitamin levels are extremely common when hypothyroid, especially if you have high thyroid antibodies
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or 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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
If you've only just managed to get them into range with supplements, then they are probably still not high enough and still deficient. You also need to be careful not to go to high in some of them like vit d as too high is as bad as too low. Post your results and people will be able to advise. You also need to think about why your levels are all low - do you eat enough, do you have stomach issues? Remember there are tonnes of different nutrients and micro nutrients, if you are low in the main 4, you're likely low in everything else too. Nutritional deficiency will stop your thyroid working properly etc
Thanks for the reply. I do have stomach issues like IBS and acid reflux which I take a proton pump inhibitor for about 3 x weekly so perhaps this is affecting my absorption of vitamins and minerals.
I have been prescribed Omeprazole for several years, though don't need it often (prefer to chew Gaviscom tablets if I have to have something). I stopped Omeprozole altogether after being prescribed Levo. Apparently hypothyroidism lowers the stomach acid, and the leaflet that came with the tablets said to check with doctor or pharmacist if taking it. If in doubt ask the pharmacist - they are easier to see and of course experts in medications, side effects etc.
Yes proton pump inhibitors can cause more problems than they solve and will reduce your stomach acids and therefore absorption. best thing to do is work out the reasons for your ibs and acid reflux in the first place - docs don't bother with this, they just tell you IBS and say nothing can be done. You can try an elimination diet but the main culprits are gluten and then dairy. gluten has to be 100% including cross contamination.
I had ibs for donkeys years apparently but after I gave up gluten, I've had a perfectly working digestive system ever since and all my other health issues disappeared alongside including deficiencies so worth a try.
Didn't know that, silverfox7. Hopefully 3 x weekly that hankpym is taking, isn't as hard to come off as daily.
Glad I didn't need them very often (once a week at most) and was able to just stop.
Hi Hankpym
I too am "Subclinical". How they can call it that when the symptoms are very "Clinical" I have no idea! After having a couple of blood tests because of tiredness I was given Ferrous fumarate and Folic acid with slight improvement.
But it wasn't until I had what appeared to be a virus infection and the symptoms got much worse that they began to test thyroid hormones and I was finally put on a "Clinical trial" of levothyroxine.
Could you ask for a trial? Sounds better than treatment - more "Scientific - and the word "Trial" means they are not committing themselves to treatment and can't be blamed if it doesn't work!
Have you been tested for thyroid antibodies?
Your results are worse than mine - my highest TSH was just under 6, and my T4 levels only low-ish according to their range. Why on earth don't they adjust the ranges???
Can you get a letter from the private specialist to give your GP? That may help too. Or change your GP if you can!
In the states std of care is not much better then I read in this thread and forum in general but there are holistic and more experienced Endocrinologists that go by patient symptoms as well: cold extremities, thinning hair / eyebrows, low energy, weight issues, other hormone levels low range.
Armor is often preferred for women since per the Edo's and reading comments that some women are poor T4-->T3 converters so some t3 is needed. Levo is not so universally prescribed in the US vs what I read in healthunlocked. I find it odd so much Levo use vs Armor or Naturiod (if available).
For folks wanting to self treat; you can order Levo, Armor off shore.. Google.
You can also buy Thyrovanz no prescription needed. Bovin sourced, where Armor is pig.
I've found iodine suplimentation (1mg -->12mg/day) to be a great help at jumping T4/3 and other hormone levels and cell function. Book: Iodine crisis, Lynn Farrow, Iodine why we needed it, Dr Brownstein.
It's rare in UK to be iodine deficient and anyone with Hashimoto's (most common reason for being hypothyroid ) is likely to be best avoiding any extra iodine
I got treated at lower tsh than you and similar T4... telling them my 80 yr old mother had more energy than me seemed to help as did flopping on the desk as too exhausted to sit properly...
Could the private specialist write a recommendation of medication to your GP? you wouldn’t get Armour but you might get a ‘trial’ of levothyroxine. The first thing I noticed when I started was the brain fog lifting.
The brain fog is the major thing for me. I am in my early 50s and am struggling at work. I am a software developer and in recent years I just cannot figure out stuff that a few years ago I would have solved in minutes. If I lose my job then at my age it would be a struggle to get another. Some days are ok and I feel like the veil is lifted and everything is easy but the fog and the struggle to switch focus always return.
All this was relayed to my GP but the arrogance and condescension returned by him was particularly annoying. "Look this is the lower number and this is the higher number - it is called a range and you are within that - what is it about this that you do not understand?"
Many people would experience low B12 symptoms if level is under 500......yet a GP would likely say a result of 210 is fine
In fact, we frequently see such ridiculous statements
In range, is definitely not the same as optimal
TSH range is typically 0.5-5.6
Some people walk around feeling pretty normal with TSH way above top of range, at say 10. But other people might really struggle with TSH at 3
The whole picture needs assessing. Symptoms and vitamins and gut and gluten issues
GP just wants to look at one number.....the TSH. It's completely inadequate
Low stomach acid is very common hypothyroid symptom. We frequently see this misdiagnosed as high stomach acid. Symptoms are similar, treatment is very different
Very often gluten intolerance is underlying issue too
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Newly diagnosed with sub clinical hypothyroidism 
Subacute thyroiditis and sub clinical hypothyroidism 
Sub Clinical Hypothyroidism, TSH/T4/TPO antobodies
Hypothyroid NHS treatment
Sub clinical Hypothyroidism and resting heart rate
