Hi there, Just looking for some advice from others who have had thyroid issues for longer than me. My GP first picked up abnormal TSH in July 2022 from a routine blood test. In July it was 4.81 miu/L, they retested in October at which point TSH was 7.05 miu/L, and the also did Thyroid peroxidase antibody level which was 136 iu/mL. Now in January TSH is 8.06 miu/L. GP says the don't normally treat until TSH is over 10, but since September I've been battling fatigue, brain fog, aching limbs, and putting on weight. They tested to check it wasn't early menopause (I'm 41) but those tests have come back normal. What is other people's experience? Should I pursue the GP for medication or is it best to wait until levels are higher? They've said retest again in 3 months but I'm finding life really tough with such exhaustion and not being able to think clearly. Are there other things that might help me? Be grateful for any advice, I don't know anything much at all about thyroid problems other than my Mum had Graves. Thank you!
New here, TSH 8.06 should I be pursuing GP for ... - Thyroid UK
New here, TSH 8.06 should I be pursuing GP for medication?
Since you have symptoms you should be medicated. The guidelines are not crystal clear but somewhere they do say to treat if there are symptoms. Also, your numbers are gradually getting worse, occasionally thyroiditis can get better after a little while but this is not happening in your case. Tell them about the impact on your life, how it affects your day to day routine rather than just mentioning symptoms - they tend to understand this better.
yes pursue!
I’m 48, had two abnormal TSH 4.8 and 5.5 and started with a trial of 25mcg, I was given tonnes of advice here as that is a starter dose and have since tested privately every 8 weeks and worked up the doses (based on symptoms even with TSH in range) am now on 125mcg 15 months later.
I’ll be honest I felt worse before I felt better, better happened after 75mcg, months of supplements (I was a healthy diet person before) but turned out I needed D3 K2, B complex, selenium, folate, ferritin via liver twice a week.
So those antibodies confirm Hashimoto’s, you might have experienced swings of hyperthyroidism through your life (I was a skinny sweaty anxious teenager and had phases of rapid weight loss in my 20s and 30s). That is all over now, very hypo symptoms at diagnosis.
Most useful resources for me have been Izabella Wentz books and advice here, I’ve followed what the admins say to the letter.
Main thing is to accept it’s a long road to feeling better. Changing diet, meds, supplements needs to be done way slower than you actually want, you will feel sicker if you rush and you won’t know why.
To get good advice here it’s best to get hold of your blood test results with ranges, get your vitamins checked (have a look at Monitor my health or Medichecks websites), finger prick test on the post, put results in a post here and await an avalanche of suggestions. Thyroiduk10 discount code works plus other discounts available via thyroid Uk website.
Wishing you well, ask lots of questions there is a wealth of experience here 🌱🦋🌱
NHS Thyroid disease: assessment and management
NICE guideline [NG145]Published: 20 November 2019
"1.5 Managing and monitoring subclinical hypothyroidism
Tests for people with confirmed subclinical hypothyroidism
Adults
1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.
Treating subclinical hypothyroidism
1.5.2When 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
1.5.3Consider 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.
1.5.4Consider 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 was treated by NHS with TSH 5.7 then 6.8. my symptoms were already making life / work really difficult to keep up with. and had been for the previous 3/4 years . The level of TSH is not a good guide to the level of symptoms .. some people are really struggling long before TSH gets to 10.
When you realise the most common level for TSH in healthy people is around 1 , this starts to make more sense.
Once started on levo (usual starting dose is 50mcg /day ).... don't get fobbed off with "your TSH is back in range now , so it's fixed" ..
you may need to use these references: healthunlocked.com/thyroidu... ( my-list-of-references-recommending-gp-s-keep-tsh-lower-)
.... to get GP to increase dose until symptoms are improved . (most people end up needing somewhere between 75mcg - *150mcg / day to feel consistently better)
*Edited to correct typo
Wrayofsunshine 1.5.2 is the bit I had in mind but couldn't remember.
tattybogle
Think you have a typo there
Did you mean 75mcg -150mcg ?
yes .. well spotted ta 
Have you looked at the Thyroid UK website? Lots of useful info there.
This page lists possible signs and symptoms of hypothyroidism.
thyroiduk.org/if-you-are-un...
You can download a list to print and tick off the symptoms which apply to you, then show it to your doctor. Also tell your doc about having thyroid problems in your family.
The NHS often only tests TSH which is not sufficient. At the very minimum you need to have TSH, FT4 and FT3 tested. Here's the ThyroidUK list of where to get private thyroid tests and many of them have discount codes. Get your own tests and post the results on here.
thyroiduk.org/help-and-supp...
It's also important to check for vitamin and mineral deficiencies. Thyroid meds can fail to work if these are low.
Best wishes.
Yes
GP is out of date
With 2 blood tests that have TSH over 5, AND high thyroid antibodies AND symptoms you should be prescribed levothyroxine
Starting levothyroxine - flow chart
gps.northcentrallondonccg.n...
Also request GP test vitamin D, folate, ferritin and B12 levels and test for coeliac disease
Standard starter dose of levothyroxine is 50mcg
Dose levothyroxine is increased slowly upwards in 25mcg steps retesting 6-8 weeks after each dose increase
Unless extremely petite likely to eventually need at least 100mcg levothyroxine per day.
pathlabs.rlbuht.nhs.uk/tft_...
Guiding Treatment with Thyroxine:
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.
Tell GP your Mum has Graves’ disease. Thyroid disease frequently runs in families
Thank you all so much for the helpful speedy info! My brain is doing its best to take it all in!
Just two follow-up questions, I had folate and ferritin levels checked in the blood test done July 22 (both levels came back as within the normal ranges), B12 was tested in October and was in the normal range and a Coeliac test was also done in October which came back negative. Would the vitamin results need to be rechecked regularly? I do take a high-strength multivitamin most days.
Secondly, I can see from my online patient record the doctor did note about starting me on a low dose of 25 mcg levothyroxine. Would it be wise to push for starting on 50mcg, or is 25 mcg better?
Thank you all so so much, its so much to deal with when you're exhausted and struggling to process information!
I see you haven't had a reply to these further questions yet. SlowDragon told me that thyroid patients need OPTIMAL vitamin levels, not just within range. So you may want to post your vitamin levels + ranges to get feedback from this forum. On top of ferritin, folate and B12 which you have had done, vitamin D test is normally recommended too.
I know nothing about starter dose of levo. If you don't get an answer, maybe start a new post with that question?
depending on how sensitive you are you may want to split the 50s for a week or so and take 25s alternately. Otherwise it can be a shock to the system and make you feel a bit heart thumpy and hot.
Vitamins in range is not the same as vitamins optimal. Some of the ranges are ridiculously huge too.
if you have your results and the range there is a calculator spreadsheet pinned on the top of the forum (can’t see it on my phone) and you can see your % through range. The admins are ace at spotting where you can make improvements, boosting these also improves thyroid hormone absorption so what’s not to love 💕
I see you are negative for coeliac, many Hashis have non coeliac gluten sensitivity, try cutting it out for 2 weeks and then eat a piece of toast, I did this, had instant back/shoulder pain and then later a rather sore and loose tummy and that was homemade spelt sourdough with no additives. I’ve tried gluten free breads and turns out many of the maize starch /tapioca starch alternatives rip through me too. You’ll have to get good at noticing patterns.
Hugs 🌱🦋🌱
I had folate and ferritin levels checked in the blood test done July 22 (both levels came back as within the normal ranges), B12 was tested in October and was in the normal range
Please add actual results
we need GOOD vitamin levels
NHS only tests for and treats vitamin deficiencies
Sorry for the slow reply, here are the actual vitamin results:
Serum vitamin B12 level (XE2pf) 985 ng/L [130 - 800]
Serum vitamin D level (XE2e7) 77 nmol/L [30 - 300]
Serum folate level (42U5.) 10.1 ng/ml [4 - 27]
Serum ferritin level (XE24r) 61 ng/ml [13 - 150]
Thanks in advance Slowdragon!
are you currently taking any vitamin supplements
Aiming for vitamin D at least over 80nmol and between 100-125nmol may be better
Ferritin nearer 100…..so increasing iron rich foods in your diet
Folate a little low
Are you on B12 injections or supplements
If not High B12 can be deceiving
Paradoxical B12 deficiency when hypothyroid is possible
b12oils.com/paradoxical.htm...
Yes, I take Holland and Barrett Super One when I remember! This it what it contains...
multivitamins are never recommended on here….cheap poorly absorbed ingredients and don’t want extra iodine
healthunlocked.com/thyroidu...
Suggest you drop multivitamin
instead get a separate vitamin D and a daily vitamin B complex to take in mornings after breakfast
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
Try 3 sprays per day and retest in 2-3 months
Test twice yearly via NHS private testing service when supplementing
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance
Difference between folate and folic acid
chriskresser.com/folate-vs-...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20
If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement
amazon.co.uk/Yipmai-Liposom...
or available as Vitablossom brand here
hempoutlet.co.uk/vitablosso... &description=true
Thank you so much, I'll look into all that!
Push to get 50 mcg as 25mcg is next to useless and after 6 -8 weeks you’ll still only be on a minuscule starter dose if they agree to up it by 25mcg it might be withdrawn on the grounds it’s not helped (small wonder - it’s too little to be of much effectiveness) some GPS are so utterly useless they take it away or keep people on 25 thinking a TSH of 5 to 9.9 is just fine, small wonder so many of us are left untreated or inadequately treated by the disgrace that is the state of thyroid medicine in the U.K. It’s nothing short of scandalous that we are forced to a have a TSH 10x what is normal before we get any help. I had to beg for a thyroid function test my TSH was undetectable one week and 110 the next it’s a wonder I didn’t die of a heart attack with my levels of thyroxine plummeting like that. I asked repeatedly if my health issues might be thyroid related I was gaslighted every single time.
Your GP sounds like a callous heartless incompetent - they are far too common I’m afraid. Don’t let that GP bamboozle you any further. Take a copy of the NICE guidelines and highlight the relevant sentence in a marker pen and give it to the GP and say you fit the NICE criteria for a 50mcg starter dose trial of Levothyroxine. Write a list of all your symptoms and score them out of 10 and present that. You could do it as a diary if there’s time. Make 10 highly debilitating and seriously interfering with your life. I’d be as matter of fact and business like about it as you can. You fit the criteria and you should get the medication.
It makes me mad when we’re seen as nothing more than numbers on a computer screen - it’s not medicine it’s madness.
Good luck ☘️🍀☘️
I did my first thyroid blood test, pre diagnosis, late in the afternoon at 5pm and was just below TSH 10. They did offer to start me on levothyroxine even though not over 10. I have since followed advice given on here to always test early morning (pre meds/food).
I did a retest privately at 8am the week following that first 5pm test and before actually starting on the meds - my TSH measured 5 points higher- so well over 10.
yes you should definitely be getting help with your TSH that high. Once you get your levothyroxine T4 medication the next thing is to check your bloods regularly, every 3 months maximum. Your TSH needs to be around 1.00 as that’s a healthy persons result in general. Anything over 2.5 and that means you are under medicated. As the months go on you should also check your T3 and if you are converting from T4 to the most important hormone T3. More than likely your GP won’t test this but do ask. If they won’t then get it checked privately. It’s not expensive. The most important hormone is T3 to keep you well, energised and symptom free.
I’d say TSH even lower - between 0.25 and 0.5
if you go suppressed most Drs don’t like it and if your on T3 you may have difficult conversations with them to obtain your medication. If you possibly can aim for just within range.
That’s what was aimed for in my case and what Toft recommends for Levothyroxine. So some endocrinologists are happy with it! It’s not actually suppressed it’s just the lower end of the range.
I still felt like pants because my T3 was very low, but close relatives have found it effective. If you take T3 containing medications then it is normal for TSH to become suppressed, why would the pituitary ask for more thyroxine to be produced if you are fully replaced with thyroid hormones? This approach simply does not make any sense . The broohaha about suppressed TSH is not good medicine especially if it’s looking at the wrong marker in isolation with no reference to T4 and T3. It’s nonsense when T3 replacement hormones are being taken. I know the medical establishment are in the dark ages but it doesn’t make them right to bully us into remaining unwell.
We will never be quite as we were when we had a functioning thyroid but I’d rather have a life and a suppressed TSH and die early as a consequence (I don’t believe I will) than live a miserable existance feeling poorly all the time, to get an extra two years of it, just satisfy some medic’s numbers’ box ticking exercise. But I was not recommending a suppressed TSH here.
What should I tell my new GP?
Fluctuating TSH should I increase meds
I am New Here!
new test results and dose review advice.
