I started taking Levo last December and my last change was to 125 daily. I had my bloods taken on Friday and GP called me today to reduce dose back down to 100 as she said my results indicated I was over medicated. TSH 0.07 with range 0.34 to 5.6, T3 6.9 with range 4 to 6.6. For the first time since starting treatment there does not seem to be a T4 result. I will have to do what the GP says and drop the dose and see what the bloods say in 6 weeks but I really don't feel that this is right. I haven't felt 'well' as such, but things have definitely improved a lot since December. Mood is still low, very tired in the afternoon, trouble sleeping, pins and needles especially in left hand. I started taking a multivitamin tablet just over a month ago but other than that nothing has changed. If I still don't feel well after 6 weeks of lower dose can I challenge the GP?
Can I challenge GP, if so, when?: I started... - Thyroid UK
Can I challenge GP, if so, when?
Please keep in mind that you don’t ‘have to’ accept your gp’s advice. How you feel is an important factor.
if you had a test on 100mcg and result s were in range ....(i'm assuming they wouldn't have put dose up to 125 otherwise ? ).. if i were you i'd 'meet them half way' .. suggest there is no point going back to 100mcg .. it's a pretty big drop and you've already tried that dose and didn't feel as well as you do now .. so offer a compromise and say you'd like to try a smaller reduction of 12.5mcg .. ie. 100mcg one day 125 the next .. or half a 25mcg tablet to take 112.5mcg each day.
that way they don't put you down as deliberately overmedicating yourself, they feel like they've done their job re. 'the risks' , and you won't feel as rubbish as you might if you drop by the full 25mcg.
Try it for 6 /8 weeks get a test , but if you feel worse then say i've tried a reduction, but i prefer to be on 125mcg. and then have the TSH argument. ( you might not need to.. results do change and not always as expected)
it's just my opinion, but if you refuse to even try it , they'll not listen to a word you say in future.
Once you've tried it, and can report it made you feel less good, it then becomes much simpler to have 'the discussion' about them prescribing a higher dose despite blood results that make them uncomfortable with 'the risk' they are enabling you to take ( as they see it)
p.s also .. you might be surprised .. i thought a reduction from 125 to 112.5 was a mistake .. but actually, overall it's better.. it took a few months before i made my mind up about it . but i sleep better and i'm less stressy. However i have slowly put a few pound on , but honestly i spent last year having to drive my daughter around and so i hardly walked anywhere ,, so it's probably that ...., i'm going to give it a few months to see if walking more looses the extra again. before considering whether to go back to 125.
Thank you
We really don't recommend multivitamins here, for all sorts of reasons.
* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.
* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.
* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.
* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc. This is especially true of supermarket multis.
* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.
* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.
* Most supplements should be taken at least two hours away from thyroid hormone, but some - iron, vit D, magnesium and calcium (should you really need to take it) should be taken at least four hours away from thyroid hormone.
*Vit C should be taken 2 hours away from B12 because it affects how the body uses B12.
*Never take magnesium/zinc/calcium at the same time as they affect the absorption of each other.
*Take zinc and copper separately as zinc affects the absorption of copper.
*Vits A/D/E/K are all fat soluble vitamins, and if taken together can compete for the source of fat. They are best taken away from each other.
* The magnesium you take - and just about everybody needs to take it - should be chosen according to what you want it to do:
Magnesium citrate: mild laxative, best for constipation.
Magnesium taurate: best for cardiovascular health.
Magnesium malate: best for fatigue – helps make ATP energy.
Magnesium glycinate: most bioavailable and absorbable form, non-laxative.
Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.
Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.
Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.
With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. A vitamin or a mineral is only going to help you if you need it, anyway. More of something you don’t need is not better, it's either pointless or even dangerous, as with iodine, calcium, iron or vit D. 
Blimey. I need to print that out and stick on my fridge! Comprehensive and clear. Thank you!
Yes, it is a bit complicated, I'm afraid. But, better coming to grips with it all than wasting your money. And possibly doing yourself harm into the bargin!
Absolutely!
Thanks for posting all of this information greygoose. It is much appreciated.
Thank you - I may as well knock them on the head until I have had vits tested.
Wow you know your vitamins, I'm glad I read , as sometimes I take my ferrous sulfate with my vit d and multi vit , at this sounds to be pointless .If the iron rules out the rest . Need a timer for all these time gaps , take levo in morn , empty stomach. 4 hours plus take iron . Do you know if sertraline and ferrous sulfate OK together . Have them on night .thanks
I don't know anything about sertraline itself, just know that iron shouldn't be taken with anything else, except vit C. So, I would take them two hours apart, if I were you.
Woweeee that was fantastic 👏
Did you allow a 24 hour gap between your last dose of levo and blood draw? Was blood drawn at the very earliest, fasting (you can drink water)?
Yes I lways book the first appointment so last dose is 7.30am the day before.
Good morning may I ask why it’s best to check your bloods after not taking Levothyroxine for 24hrs? Surely your checking if it’s helping? Many thanks 😊
"....Surely your checking if it’s helping? "
once it's got from your stomach to your blood , the T4 from levo has a 'half -life' of about 7 ish days (meaning 'after 7 day's , half of it is gone. (less any that you used up), after another 7 day's half of that remaining half is gone.. etc )So, even 24hrs after last dose, you are still measuring if it's 'helped' your fT4 level.
However , there is a big peak in fT4 levels about 4/5 hours after taking the tablet... due to that dose all being absorbed at once . this gradually reduces over several more hours, and then you can see more 'average' levels.
If you test at this high point . then the fT4 result you get will look higher than what you 'averagely' have.
So it doesn't have to be 24hrs exactly , but you do have to avoid the peak .. and since everyone's personal digestive system will absorb it at a slightly different speed, then the simplest practical /consistent advice for everyone to follow is '24hrs' ....... 12 hrs would probably be fine ,, so would 18hrs , .. but what really matters is that whatever time gap you leave before blood tests . you are consistent , so that you can properly compare the next test to the last one.
If you have one test done at the lowest time of the day for TSH (1/2 PM ish) and the highest time for fT4 (4/5 hrs after dose)..
.......and you had the next test at the highest time of day for TSH ( early morning .. well middle of night really, but you can't get a blood draw at that time ) and the lowest time for fT4 (24hrs after dose) then you could get results that looked VERY different to each other , even though nothing had actually changed since your last test, and you were still well on the same dose.
So there's nothing sacred about the '24hrs after levo ' advice .. it's just the easiest way to help people get consistency in their testing conditions, without having to explain all that every time
Vets are trained to take the time of the last dose of Levothyroxone into account when interpreting thyroid test's for hypothyroid horses, and not to test too soon after last T4 dose is given . But unfortunately GP's are not as well trained as vet's .. so they will often say 'time of test doesn't make any difference' . but they are incorrect about this., They seem unaware that TSH has a diurnal rhythm. Some may insist on patients taking tablets shortly before test because they WANT to see the highest possible level of fT4 (or fT3 if taking T3).. which is fine if they know that is what they are looking at.... but not if they think it stay's at that level all day.
There are graphs somewhere showing results of testing peoples fT4 levels at half hour intervals after taking Levo ,,and the evidence for the spike 4/5 ish hours after dose is very clear.. sorry i don't have a link.. i lost it in my awful filing system.
Thank you and yes I agree about the Vets! Maybe they should treat hoomans 🤷♀️😁
yes, i've often been tempted .. I once was sat behind a van that said " equine osteopath and endocrinology"
..... i swear i nearly followed it into the services to ask them for an appointment ....
😂😂😂😂😂😂😂😂😬
I tried to reintroduce Centrum and omega 3, it made me feel ill now I only take vitimin D.
I am amazed you managed to obtain a T3 on the NHS through your GP….
? , Emmastace is taking Levothyroxine , not T3. (or was your reply referring to someone else ?)
However , people DO still get prescribed T3 on the NHS , even though the CCG's try very hard to stop it at every opportunity they can.
Yes you can.
I was in the same situation where my GP unilaterally reduced my dose from 15mcg to 125mcg.
no consultation no discussion no reason given.
GP in particular are prone to just dropping the patients dose with no reason given and no consultation.
The GMC say that doctors must discuss their thoughts with the patient and the patient decides.
The medical negligence case of Bolitho v City and Hackney Health authority said that a doctors decision must be based on logic. i.e. there must be logical reason for (in this case) a reduction in the dose.
Some patients are told that low TSH can cause atrial fibrillation and or osteoporosis in the future. This not strictly the case.
Here is a version of the letter I wrote to my GP. I went back to 150mcg. it does need updating for example the consent referred to is now superseded, but is still relevant.
Your Address here
no_reply@example.com
Date:
Dr’s name here
Surgery address here
Post code here
Dear Dr *********
Unilateral Reduction of my dose of thyroxine (T4)
Mental Capacity Act 2005
Good Medical Practice 2013
Good Medical Practice Consent: patients and doctors making decisions together 2008
Montgomery v Lanarkshire Health Board 2015
Bolitho v City and Hackney Health Authority 1993
I write following my appointment with you on ??/??/???? regarding your wish to reduce my ???mcg dose of T4.
During the appointment I told you that I did not want to reduce my dose of T4 because I feel good on this dose. I feel well, I can do my job to the best of my ability and I can contribute properly to my family life. I am not as irritable or fatigued. I can think clearer. I told you that my signs and symptoms return on a lower dose. You said that you wanted to reduce my dose because my Thyroid Stimulating Hormone (TSH) was too low and thereby there is of a risk of Osteoporosis (OP) and Atrial Fibrillation (AF). I showed/told you about research that shows that this not the case. (See appendix 1 attached.) I told you that you have no logical justification to reduce my dose of T4.
You did not carry out or refer me for an Electrocardiogram (ECG) test to establish a baseline or detect any abnormalities in my heart’s electrical activity despite your concerns about AF.
You did not refer me for a DEXA scan to establish a baseline or detect any abnormalities in my bone mineral density despite your concerns about OP.
You then reduced my dose of T4 to ??mcg.
Good Medical Practice
I am sorry to say that because you simply went ahead and reduced my dose against my wishes you did not comply with the preamble of the General Medical Council’s Guidance for Doctors Good Medical Practice 2013:
“The duties of a doctor registered with the General Medical Council”:
“Work in partnership with patients. Listen to, and respond to, their concerns and preferences. Give patients the information they want or need in a way they can understand. Respect patients’ right to reach decisions with you about their treatment and care.”
Mental Capacity Act 2005
During the appointment you did not assess me to determine if lacked Mental Capacity as laid out in section 3 of the Mental Capacity Act 2005. Therefore I am consider that you have assumed that I have mental capacity in accordance with section 1(2) of the Act.
Consent: patients and doctors making decisions together/Montgomery v Lanarkshire Health Board 2015
As I have, and you have assumed that I have, mental capacity to make decisions about my health, I am sorry to say that you did not follow the model in the General Medical Council’s Code of Practice Good Medical Practice Consent: patients and doctors making decisions together. This is important because the medical negligence case of Montgomery v Lanarkshire Health Board 2015 stated at paragraph 93 that following the model at paragraph 5 of Consent: patients and doctors making decisions together is a legal obligation.
The Guidance at paragraph 5 of Consent… states
If patients have capacity to make decisions for themselves, a basic model applies:
A. The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge.
B. The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatments are likely to result in overall benefit for the patient. The doctor explains the options to the patient, setting out the potential benefits, risks, burdens and side effects of each option, including the option to have no treatment. The doctor may recommend a particular option which they believe to be best for the patient, but they must not put pressure on the patient to accept their advice.
C. The patient weighs up the potential benefits, risks and burdens of the various options as well as any non-clinical issues that are relevant to them. The patient decides whether to accept any of the options and, if so, which one. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor, or for no reason at all.2
D. If the patient asks for a treatment that the doctor considers would not be of overall benefit to them, the doctor should discuss the issues with the patient and explore the reasons for their request. If, after discussion, the doctor still considers that the treatment would not be of overall benefit to the patient, they do not have to provide the treatment. But they should explain their reasons to the patient, and explain any other options that are available, including the option to seek a second opinion.
With regard to part A
I told you about my condition and that it is my experience that on a reduced dose of T4, my signs and symptoms will return.
You did not assess me for signs of over treatment or refer to my blood tests for T3 and or T4 for to see if they were over their reference ranges.
I showed/told you that there is research that shows that low TSH does not cause OP.
I showed/told you that there is research that shows that OP and AF more likely when T4 and Liothyronine (T3) are too low or too high – not TSH.
I told you that I do not have signs or symptoms of hyperthyroidism such as palpitations, tremor, or sweating.
I told you that I get some of my information from the internet and patient support groups. The Supreme Court in Montgomery v Lanarkshire Health Board 2015 said at paragraph 76 of the judgement:
“it has become far easier, and far more common, for members of the public to obtain information about symptoms, investigations, treatment options, risks and side-effects via such media as the internet (where, although the information available is of variable quality, reliable sources of information can readily be found)3 (and) patient support groups…It would therefore be a mistake to view patients as uninformed, incapable of understanding medical matters, or wholly dependent upon a flow of information from doctors.
The idea that patients were medically uninformed and incapable of understanding medical matters was always a questionable generalisation, as Lord Diplock implicitly acknowledged by making an exception for highly educated men of experience. To make it the default assumption on which the law is to be based is now manifestly untenable”.
I told you that you had no logical justification to reduce my dose of T4.
With regard to part B
You simply said that there is a risk of OP and AF due to low TSH. It has been shown that the risks of OP or AF is due to either too much or too little for the individual patient’s T3 and T4.
You did not quantify the risk of OP or AF in a way I could understand or at all. Therefore, you have not adequately explained the options to me and the possible risks or benefits of staying on my dose, raising my dose, changing to Liothyronine (T3) or having a mixture of T3 and T4.
By not quantifying the risks of the above options to me personally, you have not given me the opportunity to weigh the risks and benefits of each option as required in part C of the GMC’s model.
You did put pressure in me to accept your decision by simply saying that you are reducing my dose.
With regard to part C
I have the mental capacity to make decisions about my health. I have read the research referred to above. I understand that the risk of OP and AF is from having too much or too little T3 and/or T4 for me as an individual. I don’t have the signs or symptoms of too much T3 and/or T4. My blood tests show I am not outside the reference range for T3 and/or T4. I have weighed up the theoretical and mostly unfounded risks of staying on my dose against the actual risks of lowering my dose. I have also considered the non-clinical factors of lowering or remaining on my dose, such as the impact on my family life and work life if my signs and symptoms recur, as they will do if my dose is reduced.
I have assessed the risks of OP and AF by lowering my dose to be much higher than remaining on my dose.
I have decided to remain on the dose I am on.
With regard to part D
Remaining on my dose is clearly of overall benefit to me. I feel well, I can do my job to the best of my ability and I can contribute properly to my family life. I am not as irritable or fatigued. I can think clearer. Reducing my dose will result in harm to my health by the return of my signs and symptoms. It will also negatively impact on my work, private and family life. Further, as described above, there is no reliable evidence that low TSH actually causes OP or AF.
If you are still of the opinion that you want to reduce my dose to ??mcg, please explain how remaining on my current dose would not be of overall benefit to me in writing. It is important that you quantify the risk of OP or AF to me as an individual in your written explanation. Good Medical Practice at paragraph 47 says that you must treat me an individual. Please be aware that there is another body of responsible medical opinion that agrees with maintaining a dose of thyroid medication that suppresses TSH without causing thyrotoxicosis and had been recognised as such by the General Medical Council.
Lack of logic to reduce dose of T4
I am unaware of any guidance to unilaterally reduce a patients dose of T3 and/or T4. Such guidance does not appear in the British Thyroid Association’s statement on the management of primary hypothyroidism. Recommendation 7 states:
“Although fine tuning of serum TSH levels within the reference range may be indicated for individual patients, deliberate serum TSH suppression with high dose thyroid hormone replacement therapy (serum TSH <01 mU/L) should be avoided where possible as this carries a risk of adverse effects such as cardiac rhythm disorders including atrial fibrillation, strokes, osteoporosis and fracture (1/++0). As an exception, patients with a history of thyroid cancer may require deliberate suppression of serum TSH if there is a significant risk of recurrence”.
It does not recommend that ALL patients on thyroid hormone replacement therapy unilaterally have their dose reduced. It states “where possible”.
This recommendation is now out of date following research that low TSH is not a factor in OP or AF but excess or low T3 and/or T4 is. To blindly follow this out-of-date statement is in conflict with a doctors legal obligation to follow the model consultation in Good Medical Practice Consent: Patients and doctors making decisions together.
The Royal College of General Practitioners Curriculum states at 3.17 that a GP should:
“Recognise your central role as a primary care physician in managing diabetes mellitus and hypothyroidism”,
and
“Recognise the potential for abuse of thyroxine and propose strategies to reduce dosage”.
I can assure you that simply being on a dose that makes me well is not abusing thyroxine especially if my blood tests for T3 and T4 are within their reference ranges. Any strategy to reduce dosage must be logical. This is confirmed by the medical negligence case of Bolitho v City and Hackney Health Authority 1993 which states that a doctor’s actions must be logical even if it is supported by a responsible body of medical opinion. For the reasons above, I do not believe that your action to reduce my dose without any evidence or following the BTA statement contrary to my well evidenced and argued wishes to remain on my dose of T4 is logical.
If you have concerns about me suffering from AF or OP please refer me to a cardiologist for an ECG test and an Orthopaedic specialist for a DEXA scan.
I hope you reconsider your decision to reduce my dose of T3 and/or T4 and restore it to the level that makes me feel well and contribute to my work and family life. I value my actual health more that an unfounded and unquantified potential risk in the future so much that if my dose is not maintained or restored, I will take this matter further by way of complaint to the Clinical Commissioning Group, the General Medical Council or by a claim for negligence.
Yours Sincerely
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Type your name here
Appendix 1
Thyroid Stimulating Hormone and Bone Mineral Density:
Journal of Bone and Mineral Research, Vol. 33, No. 7, July 2018, pp 1318–1325
DOI: 10.1002/jbmr.3426Evidence From a Two-Sample Mendelian Randomization Study and a Candidate Gene Association Study
Nicolien A van Vliet,1 Raymond Noordam,1 Jan B van Klinken,2 Rudi GJ Westendorp,1,3
JH Duncan Bassett,4 Graham R Williams,4 and Diana van Heemst1
1Department of Internal Medicine, Section of Gerontology and Geriatrics, Leiden University Medical Center, Leiden, the Netherlands
2Department of Human Genetics, Leiden University Medical Center, Leiden, the Netherlands
3Department of Public Health and Center for Healthy Aging, University of Copenhagen, Copenhagen, Denmark
4Molecular Endocrinology Laboratory, Department of Medicine, Imperial College London, London, UK
ABSTRACT
With population aging, prevalence of low bone mineral density (BMD) and associated fracture risk are increased. To determine whether low circulating thyroid stimulating hormone (TSH) levels within the normal range are causally related to BMD, we conducted a two-sample Mendelian randomization (MR) study. Furthermore, we tested whether common genetic variants in the TSH receptor (TSHR) gene and genetic variants influencing expression of TSHR (expression quantitative trait loci [eQTLs]) are associated with BMD. For both analyses, we used summary-level data of genomewide association studies (GWASs) investigating BMD of the femoral neck (n.32,735) and the lumbar spine (n.28,498) in cohorts of European ancestry from the Genetic Factors of Osteoporosis (GEFOS) Consortium. For the MR study, we selected 20 genetic variants that were previously identified for circulating TSH levels in a GWAS meta-analysis (n.26,420). All independent genetic instruments for TSH were combined in analyses for both femoral neck and lumbar spine BMD. In these studies, we found no evidence that a genetically determined 1–standard deviation (SD) decrease in circulating TSH concentration was associated with femoral neck BMD (0.003 SD decrease in BMD per SD decrease of TSH; 95% CI, –0.053 to 0.048; p.0.92) or lumbar spine BMD (0.010 SD decrease in BMD per SD decrease of TSH; 95% CI, 0.069 to 0.049; p.0.73). A total of 706 common genetic variants have been mapped to the TSHR locus and expression loci for TSHR. However, none of these genetic variants were associated with BMD at the femoral neck or lumbar spine. In conclusion, we found no evidence for a causal effect of circulating TSH on BMD, nor did we find any association between genetic variation at the TSHR locus or expression thereof and BMD. © 2018 The Authors. Journal of Bone and Mineral Research Published by Wiley Periodicals, Inc.
Appendix 2
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, and Graham P. Leese
Ninewells Hospital and Medical School (R.W.F., R.T.J., T.M.M., A.D.M., G.P.L.), University of Dundee, Dundee DD1 9SY, United Kingdom; and School of Accounting, Economics and Statistics (S.R.B.), Edinburgh Napier University, Edinburgh EH14 1DJ, United Kingdom
Context: For patients on T3 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 T3 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 T3 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 T3 to have a low but not suppressed serum TSH concentration. (J Clin Endocrinol Metab 95: 186–193, 2010)
Wow, wow, wow! And did he let you keep your dose? That's a brilliant letter. They try to scare me about AF if my TSH should go low (it's never been low yet!) but I live with permanent AF so what the flip difference do they think that might make!
Yes I got my 150mcg!
I don't want to minimise the effects of AF but in my view it is not as bad as some doctors make out. i did some research and found that less than 1% of admissions of A&E due to AF had thyroid problems as the cause. The flip side to this is that some thyroid patients were admitted to A&E with AF.
as i said in the letter, if they are concerned about AF in the future they should track it on an individual basis not just as blanket statement. They should find a baselines of how your heart is and monitor that, along with monitoring T4 and T3. any changes should be investigated not just having T4/T3 reduced automatically.
To me, simply reducing T4 is poor/lazy medicine.
As we know, using TSH to base health on is a terrible idea. There is evidence out there that over range T3 can cause AF and osteoporosis, but also that Low T3 can do the same. They never threaten us with that one!
AF can be very frightening, but it's an electrical fault, not a heart plumbing fault. I inherited mine. When it was proximal, out of the blue and very violent it was terrible. But one day one of those events just calmed down and didn't stop and I've been like it ever since. Most of the time I can't feel it. I makes itself known now and then. The worst problem is I have to take a beta blocker because it gave me a high heart rate. Even with the beta blocker my resting rate is in the low 90's most of the time. I hate that part. I used to have a resting rate in the 70's. It means I can't really use HR as an indicator in thyroid med dose increases.
Could you point to the evidence about the potential of high or low T3 to cause osteoporosis and/ or AF please? I would be very interested.
Have a look at thyroidpatients.ca. You will need to search for the topics but it's an easy site to find stuff on. Also, low T3 causing AF is in the ncbi.nlm.nih.gov/pmc/articl..., but again you have to look as I've not bookmarked them. Also PubMed.
Thank you.
Get on! I bet they got a bollocking 😬😮
Wow. I am certainly going to save that. ...... and do more research regarding heart and thyroid. I had stents put in 6 years ago and I am on medication for life but I really need to understand the connection/risks etc.
This post healthunlocked.com/thyroidu....
links to a good article from GP online with lots of detail about heart/thyroid . written for GP's by specialist registrar in cardiology , and specialist registrar in endocrinology.
Strongly recommend getting full Thyroid And VITAMIN testing done BEFORE agreeing to dose reduction
What vitamin supplements are you currently taking
Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results
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 at least annually
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
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 all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
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 down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
I really need to get the full gamut of tests done if only to have a clear picture. I really hate this battle with the GP surgery every time. Even asking for the results stresses me out because from the very beginning I have always been told ' everything normal' even though I was constantly feeling really ill, very little of my body felt like it worked and I was having to drag myself off the floor several times a day.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
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 with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Your doctor should be symptom led and not blood test result led. You don't have to do as he tells you if you feel the adjustment will have an adverse affect on you! As you have pins and needles too I wonder if you have had your B12 tested as neurological symptoms relate more to B12 deficiency than thyroid issues do. As you are taking a multivitamin it may contain a proportion of oral B12 - this is likely to skew any B12 tests. You really need to be free from that for a couple of weeks at least before a B12 blood test is taken.
I have never had vitamins tested as far as I know. I will research that too.
Come back with new post once you get full thyroid and vitamin testing results
The pins and needles are probably carpel tunnel problems. Apparently, something that can go hand in hand (!) with hypo! Have it looked at and probably released. I did.
I know I have some form of carpal tunnel or problems in that area because I have had trigger thumbs for the last 4 years. They stick in the straight position but if I knock them bent the pain makes me nearly pass out when I bend them back straight. Injections haven't worked on either thumb but over time they release. Strangely I only seem to have one affected at a time and they take it in turns. I have been told it is related to carpal tunnel but don't know if it is true.
In case you meant further recourse. Whilst you can always challenge, you'd likely be wasting your time taking it further as GPs are bullet-proof. And, despite their remit, NHS England will basically protect the GP every time, whatever they do clinically or otherwise. As you'll realize, we have some experience with this fruitless exercise!Good luck.
Meds increase query ??
Can I avoid a blood test?
Blue Horizon Results. Graves Worry.
Should I accept GP advice for dose reduction?
New bloods - I am SO confused!
