I had some blood tests in June 23 due to feeling very run down and catching viruses regularly that we're hard to shake. I did not know at the time exactly what tests the doctor ordered but he rang me up to say they they had detected a "potential future problem" of hypothyroidism. He was pretty vague about it and just said to rebook another test for 3 months later.
In Sep 23 I had more blood tests and when I rang to get my results I was just told "nothing has changed we're just going to continue to monitor it, you'll need to get tested every 6 months".
I discussed all of this with my sister who has been diagnosed with Hashimotos (which I told the doctor).
My sister suggested I ask doctor for thyroid antibodies test. I never got round to doing that but recently I've been having some symptoms I thought could be related to my thyroid so booked another appointment with my GP this week.
During that appointment I asked about the antibodies test and was told "oh yeah you had that in June and it was positive". She then explained what that meant. Turns out my antibodies test was positive and my TSH elevated but T4 within range. She never mentioned Hashimotos but she agreed to re-test early (appointment booked for tomorrow).
After discussing with my sister more I went and requested a copy of my blood test results from June and September, see below:
June 23
TPO = 846.7 (0-100)
TSH = 6.2 (0.23-5.6)
T4 = 12 (9-28)
Sep 23
TSH = 8.2 (0.23-5.6)
T4 = 12 (9-28)
So my understanding (and my sister's) of these results is that I have an autoimmune condition that's affecting my thyroid (i.e. Hashimotos) but at the moment the TSH is managing to stimulate it to produce enough T4.
So does this not mean I have subclinical Hashimotos? Why hasn't the doctor told me that? Will they only diagnose if it requires medication? I'm a bit confused.
For context I'm in Scotland, not England so not sure if that changes how these things are managed.
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blossom83
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You should be offered levothyroxine with a TSH that high. Your thyroid isn't going to get better - the antibodies are going to continue attacking your thyroid and make it worse over time.
Technically they have diagnosed you, they just haven't bothered to tell you the term. By telling you you have positive antibodies, that means you have Hashimotos.
Thanks I thought as much but the GP on Monday definitely said it doesn't require medication at the moment! Hmm... I will wait and see what the new blood test results say but either way it seems I need to discuss with the GP more.
For reference, I started on levothyroxine with a TSH of 6.5. Many NHS doctors don't want to start you on it before your TSH reaches 10, but if you've got symptoms they're only going to get worse. Its worth trying to push for treatment.
I have no idea why doctors are so resistant to the idea of diagnosing people with this officially. I was also really ill last year, had a bunch of tests, had to ask for an appointment mentioning the blood test results after looking at them myself and they were like what,what’s the issue? The fact I have elevated TPO and lowered TSH and all kinds of ocular symptoms is my issue
So does this not mean I have subclinical Hashimotos?
No, it means you have Hashimoto's Thyroiditis and what they call sub-clinical hypothyroidism. But you are actually pretty hypo because you become hypo when your TSH reaches three. So, you do need medication like yesterday!
However, the NHS likes it to go over 10 before they will diagnose. That said, with highantibodies and two consecutive TSH over-range, they are supposed to diagnose hypo anyway - I think it says that in the NICE guidelines. But, I don't know if that applies in Scotland.
So my understanding (and my sister's) of these results is that I have an autoimmune condition that's affecting my thyroid (i.e. Hashimotos) but at the moment the TSH is managing to stimulate it to produce enough T4.
Well, it isn't, actually. Your FT4 is only 15.79% through the range. Euthyroid (normal) would be at least 50% through the range - and hypos need it even higher than that. So, time to put your foot down and insist you need treatment.
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
TSH should be under 2 as an absolute maximum when on levothyroxine
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Your GP should be starting treatment following 2 TSH results above range 3 months apart.
Many believe it has to reach 10 but there is also another criteria of the 2 TSH results above range.
You should be started on 50mcgs Levo if you are fit and healthy otherwise and no heart issues.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Thanks so much for all the replies. A bit more information:
In June my vit D was tested along with a full blood count and other things like liver function. I don't think B12 was tested.
I am vegan so I already supplement B12 and vit D. In fact my multivitamin also has iron in it.
My vit D levels were fine - 75 (50-139) - so the GP said they won't test for that again. However she did say they'd 'check for anemia' so I have full blood count and thyroid function test scheduled for tomorrow.
I have been tested for coeliac before when I was experiencing abdominal pain but that was about 6-7 years ago now (was eventually diagnosed with IBS, after having gallbladder removed). My grandad did have coeliac disease, not sure if that's relevant.
I have an appointment booked with doctor for 4th March so will ask then about medication, tests for B12 etc and coeliac test.
Does anybody know if NICE applies in Scotland or is it just England and Wales?
I don't know that the NICE guidelines do conver Scotland. They have something called SIGN but I cant see anything there related to thyroid. sign.ac.uk/our-guidelines/
Often diagnosis comes down to personal opinion and if you try a different doctor you might get a different, better response. Also be persistent in a nice way.
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150.grassrootshealth.net/projec...
Multivitamins are never recommended in this group for a number of reasons. They often have low amounts of vitamin, not enough to cover a deficiency, poor quality and inactive ingredients. They also contain iodine which isnt recommended.
Taking iron in a multivitamin will mean that you wont absorb well the other ingredients. Its better to test and supplement with separate products that you can adjust the dose of.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)?
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day.
I found some guidelines on thyroid conditions for my local NHS board. It seems where I am the guidance is to hold off on medication until TSH is over 10 if T4 is within range. No mention of medicating after 2 elevated TSH results unfortunately.
So at this point I think I need to wait and see what the results of this morning's blood test are and take it from there.
If the TSH is still under 10 and T4 still within range I will at the very least be pushing for testing B12, Vit D etc., because if they are low I can sort out supplements to improve them and hopefully feel a bit better! 🤞
You are confirmed Autoimmune Hashimotos, your TSH has been above range, and you have symptoms. These are things GPs will probably understand.
Your FT4 is dreadfully low. But low yet in range results isn’t something many doctors understand as bad.
But it is. And if you don’t have awful symptoms yet, it just means your body is compensating for the low T4 (and likely low T3) with things like cortisol and adrenaline - putting stress there, but your low Free Ts will also be increasing your cholesterol, inhibiting iron/ferritin absorption, etc.
Waiting until your TSH hits 10 is just waiting while low thyroid hormone levels ravage your body.
You are so lucky to have the information you have, and the sooner you treat the better.
I found some links to Scottish healthcare guidelines. Hopefully you can use to support getting a Levo prescription.
Here’s a letter saying Scotland will continue to follow NICE guidelines:
I am pleased to advise that, in March 2019, the Scottish Clinical Biochemistry Network published guidance for thyroid testing. This guidance was peer reviewed and is now available on the network website using the following link: [link is broken but] . This guidance is also reproduced in Section B.
We will also continue to follow the development of the NICE guideline on thyroid disease, which is due to be published later this year.
If this is an official Scottish source, it plainly spells out the dangers of leaving under active thyroid untreated.
It’s very important that an underactive thyroid (hypothyroidism) is diagnosed as soon as possible.
Low levels of thyroid-producing hormones, such as triiodothyronine (T3) and thyroxine (T4), can change the way the body processes fat.
This can cause high cholesterol and atherosclerosis (clogging of the arteries), which can potentially lead to serious heart-related problems, such as angina and heart attack.
Therefore, you should see your GP and ask for a blood test if you repeatedly have symptoms of an underactive thyroid.
Hopefully you can sweet talk the GP into acknowledging they should follow NICE guidelines- which are as pasted in the pic here, snapped from a link above.
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