I have been reading the forum daily for the last three months, now it's time for me to post.
To cut the long story (I'll put it in my profile later) i have maaaaany hypo symptoms and struggled to get help from GPs. Finally did the private test and only regret that I haven't done it sooner. These are the results:
TSH - 8.66 (0.27-4.3)
T4 - 67.6 (66-181)
FT4 - 13.4 (12-22)
FT3 - 5.13 (3.1-6.8)
TgAB - 111 (<115)
TPOAb - 219 (<34)
B12 active - 62.6 (37.5-188)
Ferritin - 37.9 (13-150)
Folate - 26.1 (8.83-60.8)
D - 73.3 (50-175)
I have some thoughts after reading all the great comments on here, but still any advice is welcome. My biggest question is how to present my case to the GP. I'm asking, because I remember reading here that the NHS doesn't want to treat hypo unless TSH is above 10. So I'm worried. I really need help.
Thanks in advance!
Lucy
Written by
Indygo
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Hiya, there are other on here better qualified than me to comment but from what i know of my recent tests and diagnosis, is that a lot of people need their TSH to be under 2 (some lower) and their FT4 to be 75% through the range to feel ok. T3 really important too but I'm not knowledgeable enough to comment on your T3 levels. I can see that all your vitamin levels are too low for someone with thyroid problems. Re G.P. sometimes a letter can help, because you can get more facts down including how its affection your life (be specific ). It may well be a battle to get a levothyroxine trial from. GP but you could ask to be referred to an endocrinologist. I ended up seeing one privately and then managed to get my nhs g.p. To prescribe from there. You can email someone on here for a list of Hashimoto's- friendly endocrinologists ( if thats what you have) There is a private and an NHS list. Be reassured though, you're in the right place- the help I've had on here is invaluable 🙂 My private endo diagnosed me at TSH 4 with similar ft4 to you (and i had super-high TPOab). He then wrote to my GP asking him to take on the prescribing. Hope some of this helps- its a bit quiet on here tonight 🙂
tukadmin@thyroiduk.org to-ask Dionne for a list of endocrinologists bit I’m guessing you may not get a response until after xmas now. Im going to look st the NICE guidelines for you because although they say the same rubbish about not treating under TSH 10, there is something about offering a treatment trial. Back in a bit .
nice.org.uk/guidance/ng145/... Go to ‘general information’ 112. I honestly think your best bet will be in seeing a good endocrinologist . Good luck, im so sorry you’re suffering. Its truly awful that we should have to fight for treatment but you’ll get there in the end!
Great advice to indygo ❤️ as you say theirs plenty of lovely people on here who can help.. But this TSH being the best test to indicate hypo is total rubbish and needs to be changed.. My last results were TSH... 3.53..range.. 3.10-6.80pmol/L..my T3 was 2.3.range 3.10-6.80..T4...10.9..range11.00-22.00..i feel very unwell and have taken to my bed again I feel exhausted no quality of life.. I should mention I now have no thiyroid and rely on levo alone for my hormones so because ourTSH has not reached the top range are gp and endos assuming we are well? because that's not the case this is what we get from professional people who train to get people well from illness and disease we all know on here that really doesn't happen when they are transfixed on doing TSH as a guide to how we feel appalling.. 😠😠😠
Those were similar results to my first ones and i felt dreadful too so i feel for you. Im currently battling my GP because my TSH is now suppressed. Indygogo is in good company 😐. If you have no thyroid then it seems crazy not to prescribe you - plus your T3/4 results are out of range!
I agree with above comments about seeing an endocrinologist, or if your doctor refuses to get you an appointment then I would pay private. I am a type 1 diabetic & my hospital doctor is also an endo., so I have been looked after with mine. Your b12 & ferritin are very low & I would not be able to function on readings like that. The trouble with a lot of gps now is that they treat the figures & not the symptoms of the patient. In the last 8yrs my thyroid went into a bit of a melt down (been under active for 26yrs) due to menopause, this caused the b12, ferritin & vit d to also go low, thankfully my gp listened & acted. I do buy my own vit d, as the prescribed ones are full of fillers, so a waste of time taking. At one point I was having b12 jabs every 6-8 weeks, but for the last 5yrs every 12 weeks. The ferritin level I have learned is if you have an under active thyroid should run higher than what the gp thinks is normal, so from time to time I buy my own. Are you able to change to another gp who my be more clued up on levels ?
I persuaded a GP at a local surgery once antibodies were tested. You’ve tested positive for TPO antibodies which suggests you have hashimotos or autoimmune thyroiditis as it’s more commonly called in the UK.
Your TSH is already out of normal range and, given the presence of antibodies indicating that your body is actively attacking your thyroid, this is likely to only get worse.
Tick of all which apply to you. Take this along side your antibodies result and ask if you can trial a starter dose of levothyroxine to see if it alleviates symptoms.
This is effectively what I did with the doctor that eventually prescribed for me. I saw multiple GPs at the surgery until I found one who would listen so be persistent as well. It’s also worth noting that my TSH has never been out of range, nor my FT4 when tested by the GP, yet I was still diagnosed hypo. It can be a matter of getting in front of the right person.
Normally, primary hypothyroidism wont be diagnosed until TSH reaches 10.
However, when raised antibodies are present, together with an over range TSH, this suggests autoimmune thyroid disease (aka Hashimoto's) and an enlightened doctor should start prescribing Levothyroxine. See article by Dr Anthony Toft, leading endocrinologist and past president of the British Thyroid Association, who wrote in Pulse magazine (the magazine for doctors):
Question 2 asks:
I often see patients who have an elevated TSH but normal T4. How should I be managing them?
Answer:
The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat thyroid function tests in 2 or 3 months in case the abnormality represents a resolving thyroiditis.
But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive - indicative of underlying autoimmune thyroid disease - the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms, some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow up.
Treatment should be started with levothyroxine in a dose sufficient to restored serum TSH to the lower part of it's reference range. Levothyroxine in a dose of 75-100mcg daily will usually be enough.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
(office hours/Christmas holidays apply)
print it and highlight question 2 to show your doctor.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
If you do then list them to discuss with your GP and ask for further testing for B12 deficiency and pernicious anaema. In the meantime do not take any B12 or B Complex supplements as this will mask signs of B12 deficiency and skew results. If B12 injections/supplementation are necessary then a B Complex will be required to balance all the B vitamins but should only be started after the B12 injections/supplements.
**
Folate - 26.1 (8.83-60.8)
B12 and folate work together and this is a reasonable result for someone with such a low Active B12. Do you supplement?
**
Ferritin - 37.9 (13-150)
On the low side. Ferritin is recommended to be half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
On the low side. The Vit D Council/Vit D Society recommend a level of 100-150nmol/L.
to achieve that level from your current level you could supplement with 4,000iu D3 daily then retest in 3 months.
As you have Hashi's for best absorption you could try an oral spray (eg BetterYou) as this is absorbed through the mucous membranes in the oral cavity, although some Hashi's patients have also done well with an oil based softgel (eg Doctor's Best).
Once you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.
And I've been gluten free since beginning of September, with a two week of gluten before the test in October. Feel much better gluten free of course, wish I knew before...
I havent read the other comments yet but you are obviously hypothyroid. Most of us end up needing a TSH of 1 or under to feel reasonably well, and T3 and T4 nearer the top. Your thyroid is managing to keep up more or less but is probably beginning to struggle.
My advice is:
Try asking for a clinical trial of levothyroxine.
Also make a bullet list of your main symptoms and how they affect your life.
If that fails try a different doctor if you can. Receptionists can't advise on treatment of course but would know which doctor in the practice who is likely to be the most supportive and be willigto listen and act on your concerns. Don't diss the other doctor but say you feel really ill and are desperate for help
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Results Advice Please 
Thriva results- can anybody assess please
Results advice please
Thyroid Test Results - Thriva
Results. Advice please.
