Hello everyone I am new to this forum.
First time joining anything like this but I felt encouraged by the really helpful content from other members. I am Hypothyroid for over twenty years. I would like to find an Endocrinologist recommendation please in the north west of England.
Having some issues with my medication and blood test results and feeling side effects. Thanks
Welcome to the forum
BEFORE seeing any thyroid specialist we always recommend getting FULL Thyroid and vitamin testing
Do you always get same brand of levothyroxine?
How much levothyroxine are you currently taking?
What vitamin supplements are you currently taking
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
Please add any results and ranges if you have them members can advise on possible next steps
Getting all four vitamins optimal frequently reduces symptoms and improves conversion of Ft4 to Ft3
If you have Hashimoto’s are you on strictly gluten free diet
Hello SlowDragon
Thank you for the informative information that you have given to me.
I have been taking 100mcg Thyroxine for some time, years. I was having some health issues where I blacked out a couple of times whilst I was sitting at rest and of course went to the GP. They reduced my dose based on certain levels not being quite right. I have been on 75mcgs since July this year. The brand I am taking is Teva. Before that is was Mercury Pharma 100mcgs.
I don't take vitamins because I am afraid to affect the absorpbtion of my thyroxine.
I have recently started to get palpitations especially at night and also tightening in my throat and left arm during the day. I have also noticed that my cheeks seem to be puffy which I have never had before? I have recently had my bloods done (last week) and they are normal according to the doctor.
TSH 4.9
I had my blood test at 0840am and I took my dose of Thyroxine at 5.15am and also had a cup of tea around at approx 0700am after this. I realise now from your informative response that I should have done this differently.
I am so glad to have your help in this situation.
Thank you
Bluewater 16
So you are now very under medicated
Palpitations are frequently due to being under medicated
The aim of levothyroxine is to increase dose upwards until TSH is under 2 as absolute maximum, often TSH will be much lower when adequately treated
Ft4 should be in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
See/contact GP for 25mcg dose increase back to 100mcg
Also request that vitamin D, folate, B12 and ferritin are tested
Never ever agree to dose reduction based just on TSH
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Teva, Aristo and Glenmark are the only lactose free tablets
dropbox.com/s/6h3h0qi4eqwi6...
Teva poll
healthunlocked.com/thyroidu...
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Let us know that you got dose increase
Bloods should be retested 6-8 weeks after any dose or brand change in levothyroxine
Come back with new post once you get results
Would strongly recommend getting FULL thyroid and vitamin testing, privately if necessary at that point if not had vitamins test by GP now
Always get thyroid tested as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Dear SlowDragon
I would just like to say how impressed at the care and attention you have shown me today, Sunday, in looking at my problems with my medication and health. I really appreciate all the help and advice that you have given to me. I will ring my GP tomorrow morning and ask to be reinstated to 100mcgs. I have some tablets left from the MercuryPharma brand in the 100 mcg. I will certainly follow up on the testing and I will also get a vitamin d spray to take as well.
I know that there is so much scientific information regarding the tests and results and I find it daunting because its hard to keep track of one thing let alone all the other figures involved. I am learning a great deal though thanks to you and also the other members of this valuable forum.
Thanks again
Bluewater 16
Ideally we should always test vitamin levels before starting supplements
In part, because if very vitamin D deficient then will need high loading dose prescribed by GP
Can test vitamin D here
GP will often only prescribe to bring levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
But improving vitamin D to around 80nmol or 100nmol by self supplementing may be better
ncbi.nlm.nih.gov/pubmed/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via vitamindtest.org.uk
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
It’s trial and error what dose we need,
Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol
grassrootshealth.net/projec...
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
Taking too much vitamin D is not a good idea
chriskresser.com/vitamin-d-...
With your Vit D, are you also taking it's 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
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)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
Aim is to bring a TSH under 2.5
gp-update.co.uk/SM4/Mutable...
academic.oup.com/jcem/artic...
Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. ....... our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
Hi Bluewater. i'm a '20 yr' patient in NW too so sending you a wave hello.
I thought you might like to see how 'not normal' your 'normal ' TSH of 4.9 really is, so here is a graph showing the % of the healthy population who have a TSH of various levels. healthunlocked.com/thyroidu...
An increase in Levo would lower you TSH, the decrease in dose will have raised it.
The usual reason GP's reduce dose is because of a TSH that they consider too low, and they believe there are heart and bone risks associated with this.
There is plenty of discussion of these 'risks' (and some evidence that reassured me that as long as it is above 0.04 it's not a problem) in the links you will see in the first reply to this post healthunlocked.com/thyroidu...
The other reason for reducing is an overrange FT4 , but since you have only been given a TSH result this time , it's possible they didn't bother to check the FT4 last time either. NHS often just do TSH which is daft when what we really need to know to adjust dose is FT4 and FT3.
your TSH result will be pretty accurate , because it is mostly controlled be the time of day , and you did that right by going early am. (Eating may lower it slightly, opinions differ , but a cup of tea probably wont)
It is the FT4 result that is affected by the timing of Levo dose before the test, but it looks like they didn't test that anyway.
I've only found my way to this forum this year , but i wish i'd found it many years ago.
Hello Tattybogle
Thanks for this. I really appreciate the value of knowing that someone like you has taken the time to offer me their help and advice. I too wish that I had looked in this forum before.
I didn't have any results for FT3 or FT4 on my blood results. Surprises me that they don't mention them on my blood report? Especially as they are the important values in deciding on my thyroid status. I feel a bit disappointed in this respect. My locum doctor who I had a phone consult with last week did thyroid and full blood count for me. I haven't been feeling that good lately and kept putting things off due to the current lockdown.
I will be ringing in the morning and hopefully find out if I can go back to my previous dose and also change the brand. SlowDragon recommended this to me.
I feel a bit better to have found out a great deal more today from here and I thank you again for your help.
Bluewater 16
NHs believe that TSH is very accurate ,( which it is) ie. they can measure it very precisely. But they also believe that it tells them everything they need to know in most circumstances , which it doesn't. There are many occasions when even though they can measure it very accurately , it does not reflect that actual levels of hormone in the blood. But conveniently for them , since they usually never look at FT4 and FT3 they never get to see that evidence and continue to believe TSH is infallible.
So if you question the lack of FT4 /3 results ,you'll be told , 'TSH is very accurate' 'FT4 /3 are too variable' 'If TSH is in range, there's no need to check FT4/3' etc etc.
Recommend endo in the north west?
Looking for an endocrinologist anywhere in England
Re Devon and South West England Thyroid FB Group - name change!
Her we go again. Any blasted endo in North West not a nutter?
South West England Support Group
