I've been on 75mcg Levothyroxine since Nov 18th. I've started to feel symptomatic the last couple of weeks but at NHS bloods in Nov my TSH was 4.44 and I had to fight the GP for an increase to 75mcg. I was given lots of advice on my post the other day about TSH levels. Do you think I need to go to 100mcg or is there an in-between dose I can try?
Levo is a storage hormone, which means you don't need to take the same dose ever day. I find it easier either to do strictly alternate days (if using a pill-cutter) or go by days of the week if not cutting tablets - otherwise you just forget which day you're on
So it would be very easy for example to go to 100 mcg on 4 days a week (eg Tues, Thurs and week end) and stay on 75 mcg for the other 3 if you feel 10 mcg a day is too much x
Do these results means my 75mcg is correct dose?If I need a dose increase how do I convince my GP to do it. I've already changed surgeries to even get diagnosed and this GP at new surgery just aims for TSH in range and was a battle to get an increase when my TSH was 4.4 last time.
Feel so close to getting sorted but definitely still not quite right.
Hi E84, your anxiety level is not helping you, Take a step back. I started on 25mcg, now I am on 225mcg. It's taken nearly 20years of perseverance. I have just found out that is not that's wrong with me.
That's exactly what I was thinking. Thanks so much. Will keep my fingers crossed GP will agree. Least I'm finally on road to recovery. Been a long 2 years!
"Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L." Written for GP's by "Dr Iqbal is a specialist registrar in endocrinology and Dr Krishnan is a specialist registrar in cardiology, Liverpool".
* NOTE this one also clearly states that raised cholesterol is caused by hypothyroidism *
"The goal of treatment is to make the patient feel better and this tends to correspond with a TSH in the lower half of the reference range (0.4–2.5 mU/l).
If a patient feels perfectly well with TSH between 2.5 and 5 mU/l there is no need to adjust the dosage" .
"Given the complexity of pathways that govern TH action at tissue and cellular levels, it is not surprising that some patients receiving exogenous thyroid hormone replacement therapy report on-going symptoms despite optimal thyroid function tests
(e.g. normal T4 and T3 with TSH <2 mU/L in primary hypothyroidism).
" NHS consultant endocrinologists may start a trial of combination levothyroxine and liothyronine in circumstances where all other treatment options have been exhausted.
1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine.
(TSH 0.4-1.5mU/L)
2. Where alternative causes of symptoms have been excluded, see box 1 below"
This one ..... from PULSE magazine for GP's... The article is available from ThyroidUK
If you want a copy of the article then email tukadmin@thyroidUK.org
and ask for a copy of the Dr Toft article in Pulse magazine. The quote is in answer to question 6.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine:
"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)."
Hi I am sorry to hear your concerns . I won’t add to the discussion about your levothyroxine dose save to say that sometimes GPS need some persuasion as they tend to be mesmerised by so-called ‘normal’ ranges . However given your symptoms are so recent and you have been on treatment for two years I am wondering if there might be something else going on that needs investigation? Have you checked your vitamin and iron levels for example as these don’t usually get done on the NHS. Is it worth asking for more general blood tests like and FBC and liver and kidney tests I am not trying to set hares running - simply to suggest that a broader discussion with your GP about your recent onset symptoms might lead to a more constructive outcome than immediately locking horns on the dose of Levo. Good luck anyway
Ah sorry what I meant by 2 years, is 2 years of being unwell and dismissed. I only started on levothyroxine in October after having to change GP surgeries to even be listened to and have a thyroid test. My old surgery just labelled me as depressed. New surgery have been good but she's very blindsided by the ranges and I had to fight for an increase from 50mcg as my TSH was 4.4. Which she said is fine.I am on iron tablets and a B complex and have ordered a vitamin D test.
I feel way better than before I started on levothyroxine but the fatigue, constipation, dry skin etc is still lingering and getting me down.
Thanks for clarifying. Unfortunately your symptoms could yet be attributable to other things as indeed mine turned out to be. I guess you have to experiment with dosage and if the symptoms do then disappear then that's fine. If not, do not hesitate to push for investigations of other things. For example normal healthy adults should not need iron supplements. As you have just changed surgeries its a good time for your new GP to do a more holistic check up for you.
I have been on Thyroxine for over 10 years and still don’t feel great most days. Fed up arguing with GP. I had tests privately and most ranges rated a warning but NHS ranges totally different and wider. I started on 125mg then reduced to 100mg now on 75mg. Like Pink-Fuschia says below, I just up my dose if I don’t feel good and back down if ok. Personally. I have lost faith in GP’s. Mine actually told me that doctors really don’t know enough about Thyroid 😩. Try alternate days of 75mg then 100mg it may help.
I'm going to request from the GP a small increase like you suggest. It's such hard work and such a battle. The fatigue is really getting me down. I've gained 2.5 stone in 2 years. I just feel rubbish. It's crazy that most GP seems to think once we in range, we magically ok. Mine doesn't wanna listen to my symptoms at all. Just tells me it will take time.
I feel your pain. I eventually lost some weight by cutting out carbs and following Thyroid diet. (In book form available on Amazon) but it’s not easy and tiredness, muscle pain is stressing. I also take supplements which seem to help.
I'll check that book out. I do love my carbs though lol. Yea. I'm 37 and by evening I am literally in so much pain with my knees and hips and I'm not that excessively overweight to be in so much pain. I just wanna feel well again.
Request GP test vitamin D, folate, ferritin and B12 now
What vitamin supplements are you currently taking
Joint pain is frequently low vitamin D
Before considering booking any consultation with thyroid specialist endocrinologist….we ALWAYS recommend getting FULL thyroid and vitamin testing
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.
In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.
Gluten intolerance is often a hidden issue too. Request coeliac blood test BEFORE considering trial on strictly gluten free diet
No increase in meds since these blood results. GP is testing TSH and ferritin next week. Am awaiting results from private vitamin D test. They say 7-10 days.Vitamin B12 -
411 ng/L (187.0 - 883.0)
Folate -
3.9 ug/L (2.7 - 15.0)
These were October and have been taking a B complex since then. So will retest soon to make sure they rising.
I am on iron tablets also so will see the results of ferritin levels soon too.
Only think I haven't tested is coeliac which is on my list to do.
Just weighing up if GP won't increase my meds as has been a battle to even get this far.
Remember to stop taking the vitamin B complex 5-7 days before any blood tests as biotin in vitamin B complex can falsely affect test results
You might consider taking a separate folate and separate B12 during that week
Thyroid test should be as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
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