Hello all! I’ve found this forum so helpful and would appreciate advice on latest blood test result which is ‘optimal’ but still feel really ill and lots of hypo symptoms. I was diagnosed with hashimotos end of 2020, and recently had blood tests after 8 weeks on 50mg Levo.
For some reason they tested TSH only not full thyroid profile. I did test early and as advise from forum do think result is accurate:
TSH 2.12 - range 0.27-4.20
I want to try 75mg but gp say I’m optimal, so maybe below symptoms due to vitamin issues I need testing? ( I supplement with iron, vitamin and b12 sprays)
I’m also due a rheumatologist appointment soon due to testing ANA positive last year so maybe this is underlying cause ?
Symptoms include below, some are the same or worse than before I was diagnosed hypo. The only things I’ve noticed a gradual improvement in is less brain fog and skin issues! :
Fatigue
Muscle pain, joint aches
Extreme thirst , constipation
Hair loss
stomach pains, nausea
Poor sleep, some anxiety
Sinus pain ...
So if this is me at optimal and the best it will get I’m quite worried... I’m a woman in my 30s, not on any other meds.
Thank you !!
M
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SeasideSusie has posted information from Dr/Prof Toft which is relevant on this subject of what TSH is "optimal" or "normal". I haven't got a link, but perhaps she could post it again when she comes to the forum.
This is so helpful thank you! I’ve requested a follow up appointment with my GP as I feel I should try 75mg and track my symptoms before settling for this ‘optimal’ . Thanks, M
Your doctor is an ass! He wouldn't know 'optimal' if it got up and bit his bum. There's no such thing as an 'optimal' TSH for a hypo patient. 2.12 is too high. Thyroid hormone replacement is supposed to take TSH down to 1 or under, but how you feel still depends on the level of the FT3, not the TSH. When the FT3 is high enough to make you well, then you are optimal, and not before.
The problem with hypo symptoms is that:
a) they are non-specific - they could all be caused by so many other things. But, when you have a long list of them, which is the most likely scenario? That you have 20 different diseases with one symptom each? Or that you have one disease with 20 symptoms?
b) doctors know nothing about symptoms.
With a TSH of 2.12, you are under-medicated - not surprising because 50 mcg is only a starter dose and your doctor should increase it to 75 mcg after six weeks. A euthyroid TSH is around 1, never over 2.
And, I'm quite sure someone is going to come along with the NICE guidelines saying that the start dose should actually be based on your weight, meaning that unless you weight less than 50 kilos, you were under-medicated right from the start!
Thank you for this helpful reply ! I’m going to push for an increase to try this.
I am a petite woman in terms of starter dose but I heard from someone else who started on 25mcg recently so I think this is NHS policy now in terms of cost saving (?)
Interesting update , spoke to GP today and she says she can’t authorise me trying 75 mcg levo until they hav do consulted with an endo... sigh! So I’ll hear back next week and will keep pushing - thanks
"can't authorise an increase to 75mcg ....in a woman in 30's , on no other medication to complicate things.... who's TSH is still well above the lower limit of 'acceptable safe' TSH range of 0.27- 4.2 , without consulting Endo first ....'it's only done in exceptional circumstances' " ??.....
simply not true....none of it , especially the bit about 'exceptional circumstances for an increase from 50 to 75mch whilst TSH within range' ....
Really... there is nothing anywhere in the NHS that requires her to consult an Endo for this, and no reason i can imagine for it , other than the GP simply lacks confidence in what they are doing with thyroid treatment... i suppose you could be charitable and say she wanted to check out about the Rheumatology and ANA antibodies .... but unless i'm mistaken this has nothing to do with decisions on thyroid hormone dosing.
Oh well ... presumably Endo will tell her not to be daft and go up to 75mcg next week , but it seems a waste of a week for no reason to me.
If she talks to an equally uneducated Endo who also say's "no", things could get tricky. lets hope not.
Hopefully she's just under-confident and seeking reassurance , but if she's entrenched in this sort of attitude to interpreting thyroid results i think you'd best start looking for a different GP to sort out your dose of Levo.
If they suggest you are on enough Levo and can't have any more because it would 'overmedicate you' invite them to test fT4 , they ideally should be doing that anyway, at least until you feel well on Levo.
After that , fine just do TSH once a year unless there's a problem , but just using TSH alone when trying to get the dose right is a false economy.
For some reason they tested TSH only not full thyroid profile.
Unfortunately this is what the NHS thinks is right but it doesn't give a picture of thyroid status because TSH is not a thyroid hormone, it's a signal from the pituitary (Thyroid Stimulating Hormone) which tells the thyroid to make hormone when it detects there's not enough.
A normal healthy person will have a TSH of no more than 2 and often around 1, when on Levo the aim is to get TSH down to 1 or below with FT4 and FT3 in the upper part of their reference ranges if that is where you feel well.
Use the following to support your request for an increase in dose if GP doesn't offer one:
Fine tuning of the dose could be necessary in some patients
* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
*
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
You need an increase of 25mcg Levo now, retest in 6-8 weeks, further increases may be necessary. If you continue to have the problem of the lab only testing TSH then I suggest you do a private test with an NHS lab which offers a fingerprick thyroid panel to the general public, use discount code found in this link to buy this for £26.10. Your GP should accept the results as the test is done at Exeter NHS hospital:
What exactly are you taking and did you test your nutrient levels before starting them. We shouldn't supplement for any of the following without first testing:
Vit D
B12
Folate
Ferritin
Do you take a B Complex? If so this must be left off for a few days before any blood test otherwise it can give false results.
I would test these now, if your GP wont do them again they can be done with a private test but the NHS lab doesn't do nutrient tests. In this case you'd need one of the other private labs and they come as part of a thyroid/vitamin bundle. However, some doctors wont accept test results from these labs but you can use them for your own information and act on them accordingly:
I’m currently starting PGD IVF and my fertility consultant tested my TSH levels and they are currently at 3.27. She’s advised my GP to prescribe Levothyroxine at 25mcg then to have a blood test in 6 weeks time.
Ive just started to take the meds today and whilst looking around for how long the meds take to kick in I came across your post. The IVF clinic didn’t test anything else thyroid related other than TSH (or they did but didn’t tell me the results), would the fact they don’t know the results of the other thyroid components affect the outcome of using such a low dose for my TSH levels?
I don't know much about pregnancy and thyroid treatment other than for a successful pregnancy TSH need to be below 2.5 and that is what they're aiming to do by starting you on Levo. They should retest in a few weeks to check your TSH to see if you need an increase in your dose so maybe ask them to test FT4 and FT3 then.
Thanks so much for this informative update ! I mentioned some of this guidance to my GP today and really advocated to be able to trail 75mcg but she said this was something only done in exceptional circumstances, and she’s had to run it past an endo to consult before precsribing extra and a follow up blood test. I’m thinking I may need to change GP if it’s this difficult as a new thyroid patient.
Surely an endo would look at symptoms and results and support this?
I mentioned some of this guidance to my GP today and really advocated to be able to trail 75mcg but she said this was something only done in exceptional circumstances, and she’s had to run it past an endo to consult before precsribing extra and a follow up blood test.
This shows that your GP is ignorant of how to treat a hypo patient
Surely an endo would look at symptoms and results and support this?
Unfortunately that's often not the case, endos are mostly diabetes specialists with little to no knowledge of treating thyroid disease, they look at numbers and if they are within range then whatever you're complaining about can't possibly be thyroid related as far as they are concerned and most doctors think the same. It is a never ending battle for hypothyroid patients to get well.
One would hope that they will follow the guidance and GPNotebood and GPonline, the first two links I gave, are available to them. If that is not enough evidence then as a newly diagnosed patient the new NICE guidelines state the following:
1.3.6 Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
so you could work out the dose by weight and see how it compares to your dose.
However, that is suggested as a starting dose and after that there is
1.4 Follow-up and monitoring of primary hypothyroidism
1.4.1 Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.
so you can point out the underlined part "If symptoms persist............" and ask for dose to be increased in order for you to achieve your optimal levels to enable you to feel well.
I did ask about your supplements above and you haven't answered.
Many thanks for this further detail about endos and explaining guidance from NICE which I will have to hand at next call!
In terms of vitamins a private blood test before Xmas showed borderline abnormally low D And iron, I didn’t take any supplements a week before TSH test. Ah thanks will go back to private tests for updates results on vitamins thanks!
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