Hi lovelies, I just need some advice before I go see GP. For years I have tried to get my Levo increased as I dont feel any better on 75mgs. Been on this dose for 10 years. Periodically I have upped it myself to 100 and felt so much better but as GP goes by my bloods she wont up my dosage. So I dont run out of Levo I always end up dropping. In Nov I had bloods done and result was TSH 0.05(02-4) so GP dropped my Levo to 75mgs one day....50mgs the next and so on. I wasnt happy about this but she asked if I had been feeling ill or if my heart had been racing....I said no. Then she checked my blood pressure and told me it was raised which was another sign I had too much Thyroxine in my body. I was on this lower dose until Jan 10th...I felt so tired and had constipation all the time. I went away on holiday so went back to 75mgs every day. I had bloods done o 1st Feb at 8.30am and I stopped taking Levo 24 hours before. Just got results today...TSH 6.6(02-4). Vit D tested and thats 66(50-100). No other vits were tested. GP wants me to go see her next week. I just wanted a bit of advice as to what my results mean? What shall I say to GP. I dont want her to drop my dosage. I did tell her about the weight guide and I worked it out due to my weight that 100mgs was best for me plus I feel better on 100mgs but she said that only applies to people who dont have a thyroid anymore? I still have mine but it doesnt work anymore so to me its the same????? Any advice would be greatly appreciated...thankyou to all you lovely helpful ladies.
Recent Tests: Hi lovelies, I just need some... - Thyroid UK
Recent Tests
How long had you been back on 75mcg daily
Which brand of levothyroxine are you taking
Do you always get same brand at each prescription
With TSH over 2 you need dose INCREASE in levothyroxine
Initially perhaps increase to 75mcg and 100mcg alternate days
Request GP test folate, ferritin and B12 as per NHS guidelines
NHS England Liothyronine guidelines July 2019
sps.nhs.uk/wp-content/uploa...
Page 9
Test for Deficiency of any of the following: Vitamin B12, Folate, Vitamin D, Iron
See page 13
1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Comprehensive list of references for needing LOW TSH on levothyroxine
meanwhile working on improving low vitamin D
What vitamin supplements are you currently taking
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
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...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/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 NHS private testing service when supplementing
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...
Another member recommended this one recently
Vitamin D with k2
amazon.co.uk/Strength-Subli...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
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...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
Thankyou so much for your reply. I have been back on 75mgs daily since 8th Jan and was tested on 1st Feb so thats about 3 weeks back on original dose. Been on 75mgs for almost 10years. Gp wont increase dose even those I have done it myself in the past and felt better on a higher dose. The brand is Teva and its been the same brand all these years(I think) I just remember it always been a bright pink packet.I will get some of the spray vit D too. I do take Magnesium Citrate 300mg on a night....I take Levo first thing on a morning. I find the Magnesium helps me sleep and stops me being constipated.
Thankyou so much for the links too....I will read them all. Hopefully GP will increase my Levo...I have app next week. Thankyou so much for all this.....it helps so much. X
75mgs daily since 8th Jan and was tested on 1st Feb so thats about 3 weeks back on original dose. Been on 75mgs for almost 10years.
So you retested too soon after increasing dose back up …..but GP doesn’t need to know that
Only ever test 6-8 weeks after any dose change or brand change in levothyroxine
Push for dose increase in prescription to 100mcg
But probably don’t increase to 100mcg every day initially
do 75mcg and 100mcg alternate days for 6-9 weeks then retest
Teva is only brand that makes 75mcg tablets
Get Teva 100mcg initially as many people find different brands are not interchangeable
all thyroid blood tests early morning, ideally just before 9am 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
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
Only do private testing early Monday or Tuesday morning.
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
I did tell her about the weight guide and I worked it out due to my weight that 100mgs was best for me plus I feel better on 100mgs but she said that only applies to people who dont have a thyroid anymore?
Dr is incorrect
The feedback mechanism means that virtually everyone on levothyroxine will eventually be on approximately full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
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.
Also here
cks.nice.org.uk/topics/hypo...
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.
The most important results are ALWAYS….symptoms first ….followed by Ft3 and Ft4
TSH is frequently very low when adequately treated. As long as Ft3 is not over range you’re not over treat
All four vitamins needed to be optimal
Always test early morning and last dose levothyroxine 24 hours before test
Thankyou so much for taking the time to reply....I feel so much more confident now when I go see GP next week. I feel I can stand my own ground a bit more.I know doctors dont know that much about the Thyroid...which is mad but hey ho...thank god for you! This forum has helped me so much since I joined a few years back. I dont understand everything but I feel I know more than my GP and thats thanks to you and all the lovely people on here so a massive thankyou from me. X
does the GP know you increased it back to 75mcg 3 weeks before test .. or does she think this test is done on 50/75 alternate ?
can't decide if it's advantageous to tell her or not .... but either way , a TSH of 6 clearly shows you have not been on a big enough dose for a while and so it 'should' mean she easily gives a dose increase. but ...
be prepared for her to assume the TSH has gone up to 6 is "because you have not been taking levo regularly" .. even though you have ... you will probably be asked at least 3 times if you've been taking it every day .
missing lots of doses in the weeks before the test would do this to TSH ,, and when they get an unexpectedly high TSH they do usually assume we are forgetful (or lying).
Hi love, I took 75mgs one day and 50mgs the other from Nov 1st when GP told me I had too much thyroxine running round my body. I felt fine. I took this dose up til 8th Jan of this year as I was going away and didnt have chance to see GP again until I got home at the beginning of this week. She told me to go back to taking 75mgs every day and then get bloods done when I got back. Thats what I did and had bloods done on 1st Feb and now she wants to see me next week. I am really good at taking my meds and rarely forget. I started taking Amitriptyline over a year ago as a pain killer as I have a constant pain in my left side. Had scans and tests and all came back normal. Then I fell and fractured my skull and had a bleed on my brain so was given Amitriptyline in hospital for the pain. Once my head injury improved GP told me to carry on taking Amitriptyline for the pain in my side. I asked if it wouldnt interact with my Levo and was told no....but he had to look it up. Then last Nov....after 10years of taking 75mgs I get an abnormal blood result....too much of a coincidence to me that its happened when the only difference is that I now take Amitriptyline. The different GP I saw in Nov said I need more checking whilst taking both meds???? So I dont know...one doc tells me its fine to take both then another tells me I need to be monitered more. Add onto that abnormal blood test. Thankyou for replying.x
This list of recommendation to keep TSH between 0.4/ 0.5 and 2/2.5 in patients on Levo may come in useful in the future if your TSH is bottom of the range around 0.4/ 0.5 ish and a reduction is threatened
healthunlocked.com/thyroidu... my-list-of-references-recommending-gp-s-keep-tsh-lower-
some are taken straight from GP 'update' sources, and one was written specifically for GP's by MHS Specialist Registrars in Cardiology and Endocrinology . so there should be no argument about their validity .
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In future if your TSH is 0.05 again , this paper will be very useful .. (i used it to get my GP to agree to allowing my TSH to continue to be 0.05ish) .... it is part of the evidence base used to form the current NHS (N.I.C.E)guidelines about avoiding low TSH/ overtreatment of hypothyroidism .... so again there should be no question about its reliability as a reference for the issue of Risk / low TSH.
When read carefully it ACTUALLY says that the risks did increase until TSH was LOWER than 0.04 .... the risks for TSH 0.04 to 0.4 were no greater than the risks for TSH in range [0.4 -4] academic.oup.com/jcem/artic... Serum Thyroid-Stimulating Hormone Concentration and Morbidity from Cardiovascular Disease and Fractures in Patients on Long-Term Thyroxine Therapy
Robert W. Flynn, Sandra R. Bonellie, Roland T. Jung, Thomas M. MacDonald, Andrew D. Morris, Graham P. Leese
The Journal of Clinical Endocrinology & Metabolism, Volume 95, Issue 1, 1 January 2010,
"Abstract
Context: For patients on T4 replacement, the dose is guided by serum TSH concentrations, but some patients request higher doses due to adverse symptoms.
Objective: The aim of the study was to determine the safety of patients having a low but not suppressed serum TSH when receiving long-term T4 replacement.
Design: We conducted an observational cohort study, using data linkage from regional datasets between 1993 and 2001.
Setting: A population-based study of all patients in Tayside, Scotland, was performed.
Patients: All patients taking T4 replacement therapy (n = 17,684) were included.
Main Outcome Measures: Fatal and nonfatal endpoints were considered for cardiovascular disease, dysrhythmias, and fractures. Patients were categorized as having a suppressed TSH (≤0.03 mU/liter), low TSH (0.04–0.4 mU/liter), normal TSH (0.4–4.0 mU/liter), or raised TSH (>4.0 mU/liter).
Results: Cardiovascular disease, dysrhythmias, and fractures were increased in patients with a high TSH: adjusted hazards ratio, 1.95 (1.73–2.21), 1.80 (1.33–2.44), and 1.83 (1.41–2.37), respectively; and patients with a suppressed TSH: 1.37 (1.17–1.60), 1.6 (1.10–2.33), and 2.02 (1.55–2.62), respectively, when compared to patients with a TSH in the laboratory reference range. Patients with a low TSH did not have an increased risk of any of these outcomes [hazards ratio: 1.1 (0.99–1.123), 1.13 (0.88–1.47), and 1.13 (0.92–1.39), respectively].
Conclusions: Patients with a high or suppressed TSH had an increased risk of cardiovascular disease, dysrhythmias, and fractures, but patients with a low but unsuppressed TSH did not. It may be safe for patients treated with T4 to have a low but not suppressed serum TSH concentration."
So it shows increased risks when TSH is lower than 0.04 ... but not when TSH is 0.04 or 0.05 or 0.06 etc
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This recent paper show that long term supressed TSH did not significantly increase bone loss as long as fT4 was in range healthunlocked.com/thyroidu...
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at the end of the day it is 'you' that is taking the risk of bone/ heart issues with low TSH ( if you accept those risks are even real ) .. and so if they say "I have to reduce your dose, as i must follow the NHS guidelines" your GP should be reminded of this statement from page 1 of the current NHS (N.I.C.E) guidelines for treating thyroid disease
" Guideline development process
How we develop NICE guidelines
Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
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for a list of other posts with useful discussions on the subject of Low TSh / Risk vs Quality of Life .. please see my reply to this post ( 3rd reply down) healthunlocked.com/thyroidu... feeling-fine-but-tsh-is-low
This is so helpful.....thankyou so much. So so appreciate this info.x
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