Please could someone give me some advice on my Medichecks results. I took the test first thing in morning before I took my levothyroxine. I was diagnosed with autoimmune thyroiditis back in feb 2020 after a massive fight to have my antibodies tested. My tsh levels have never been below 3.56 since. I dont know what my other levels were as when I asked doctor for them just gave me my tsh levels from 2010. I take 50gm levothyroxine in the morning an hour before anything else. Every time I've had my bloods done I'm told within normal range no further action. And when telling the doctors I dont feel right for 18 months I'm told bloods are ok and is it my mental health? My medicheck results are
TSH 4.17 range .27-4.2
T3 4.81 range 3-6.8
Free thyroxine 13.5 range 12-22
The last time I had vitamins tested in march this year the doctors said they were all within normal levels.
Thank you for any help
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Ragerty
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No it's not your mental health. Sigh. You are woefully under-medicated. "Normal" or "in range" isn't remotely the same as "optimum".
Once you're on levo, the idea is to increase your initial starter" dose of 50 mcg by 25 mcg every 6 - 8 weeks until TSH is always less than 2 (and probably less than 1) and free T4 is nice and high in range (probably 70% or more) - yours is an utterly feeble 15% - so it's no surprise you feel dreadful. The only good in these results is that free T3, while too low, is at least higher in range than fee T4 ...
SlowDragon has the link to the guidelines on increasing dose - and so will hopefully pop up later.
Can you get hold of the actual vitamin results, so that you can see how far off they are? You generally want these to be half-way through range and vit D in 3 figures but with the actual results the vitamin experts here can give you detailed advice
I'm sorry you have such a useless GP - but hopefully this forum can help you get to the right level of meds and feeling better x
Thank you for your reply. I'm not ashamed to say that it made me cry not sad tears but anger relief and frustration. I have spent the last 18 months thinking I was going mad but knowing i wasnt. Thinking why doesnt anybody believe me when I say I dont feel well. I was given antidepressants told to have CBT and worst of all told by the doctor that he could prescribe someone to come and take me out to get my mind off it. And recently prescribed HRT to see if that helps. I am so angry and feel totally let down and during this time not once have they suggested that they increase my levothyroxine. I am so glad I have come back to this forum for help and advice. I've have worked out that I should be on 125 gms due to my weight which is 86 kg. Is this correct?
Thank you so much for your help it means more than you know.
I've have worked out that I should be on 125 gms due to my weight which is 86 kg. Is this correct?
That is in the new guidelines for the GP to consider as a guide to a starter dose, adjusting to individual needs when necessary. Don't get hung up on it. I really wish they hadn't included this because it makes people believe that's what they should take, regardless of whether they may need more or less. We need what we need, it's not set in stone.
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.
1.3.7 Consider starting levothyroxine at a dosage of 25 to 50 micrograms per day with titration for adults aged 65 and over and adults with a history of cardiovascular disease.
Tests for 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.
1.4.2 Be aware that the TSH level can take up to 6 months to return to the reference range for people who had a very high TSH level before starting treatment with levothyroxine or a prolonged period of untreated hypothyroidism. Take this into account when adjusting the dose of levothyroxine.
I agree with you - but it confirms that trying to make this poor lady stay on a pathetically low 50 mcg is very wrong!
Ragerty, be strong, be brave, be assured that you WILL feel better when your meds and vitamins are right. Sending you a big hug from the windswept (technically a gale I think) and rainy south coast x
I'm so confused . Can I clarify my understanding is that I should aim to get my tsh levels below 2 or until I feel better. And the right dose would be when I reached this? My tsh levels were around the 2.3 for years before I became so unwell. This I discovered when the gp give me all the tsh levels from 2010. Light bulb moment I wonder if they were testing my levels cos I was complaining I didnt feel well. I wonder what my antibodies were then i didnt get antibodies checked until feb 2020 and were told they were very high. I only managed to get them tested in 2020 cos I refused to leave the doctors until he agreed to do that and had mum in tow. My mum her twin sister and my sister have all been diagnosed with underactive thyroid ie hasimotos. Thankfully all doing well. I wrongly thought go on levothyroxine and I will well like them.
Can I clarify my understanding is that I should aim to get my tsh levels below 2 or until I feel better.
Yes, if that is where you feel well.
And the right dose would be when I reached this?
The right dose is when your symptoms have been alleviated and you feel well.
Hashi's does complicate things because of the immune system attacking the thyroid and this can cause fluctuations in symptoms and test results. When the immune system attacks, the thyroid releases hormone into the blood and this can cause a spike in FT4 levels (very high) and a suppressed TSH, this is a "false hyper" episode. Eventually things settle down and you can swing back into a hypo episode.
Thank you x what you say makes total sense I do swing from hyper symptoms to hypo sorry for 20 million questions but I just want to feel well. What would be your advice. Should I request a raise in levothyroxine to get my tsh levels down as they havent been lower than 3.56 for 2 years. I've had 8 tests during this time. But have now been told I dont need any tests for a year hence the medichecks test. How do I manage when I am having a false hyper,? Thank you
I don't have Hashi's so can't speak from personal experience. There are lots of posts made by Hashi's patients on the forum, you could spend some time looking through them. On the right of the page (on a PC) there are TOPICS and Hashimoto's is one of them. Also don't worry about asking questions, just ask whatever you need to and someone will come along and answer, either from personal experience or maybe from what they've read.
Hashi's is treated the same as non-autoimmune hypothyroidism, so the aim is for low TSH with FT4 and FT3 generally in the upper part of their ranges, if that is where you feel well.
So the quote from GP online applies whatever the cause of your hypothyroidism. I would use that information, plus the Dr Toft article, to support your request for an increase in your Levo with the aim of reaching the levels you need to feel well. Also refer to the guidelines (link above) and emphasise this
Tests for 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.
Remember that with any change of dose you need to be retested 6-8 weeks later.
Remember that all thyroid tests should be done as follows:
Always advised here, when having thyroid tests:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
Try to keep to the same brand of Levo, one you know that works well for you. Check your pharmacy bag at the counter, if it's not the brand you want hand it back and ask for your preferred brand. If they can't supply it ask for your prescription back then ring round and take it to whichever pharmacy can supply your preferred brand. Once you've found a brand that suits then ask for that to be marked on your record at the pharmacy that brand only should be dispensed - tell them that other brands give you side effects.
Do you always take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, otherwise absorption will be affected? Take any other medication and supplements 2 hours away from Levo, some need 4 hours.
How do I manage when I am having a false hyper,?
You can reduce your Levo temporarily, never let the GP reduce your dose on your prescription, it will be very difficult to get it raised again, so identifying these episodes and handling them yourself is the way to go. When hypo symptoms return after a false hyper episode, increase the Levo again.
Some general information about Hashi's:
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.
Thank you for your reply has been very useful. It has certainly reinforced what I've been thinking for a long time but choose to listen to doctors lol they know best. I've often thought about not taking my levothyroxine on the days when I felt really unwell how I wish I'd listened to my inner thoughts. I was told that hashi flare up dont happen my god they do. I'm certainly going to do more reading up on the forum about hashimotos . I have been cutting down on gluten as I had read it's not too good when you have hasimotos. But will start to cut it all out. I will have all my vits done and ask the receptionist for a print out for the results. I feel so much more positive about the direction in which I need to go. Thanks again for your help you are an absolute gem xx
I dont know what my other levels were as when I asked doctor for them just gave me my tsh levels from 2010.
Every time I've had my bloods done I'm told within normal range no further action.
The last time I had vitamins tested in march this year the doctors said they were all within normal levels.
Never trust them when they say normal, they just mean the results are within range.
ALWAYS ask the receptionist (not the doctor) for a print out of your results. In the UK it is our legal right to have a copy of our results without charge or question. Always ask for them to be printed out for you, don't accept verbal or hand written results.
As fuchsia-pink has said, you are very undermedicated. TSH maximum 2 or lower if you need it to be - see GPonline:
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
Also your FT4 is way too low, the aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges. Your FT4 is just 15% through range.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication 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 this article from ThyroidUK:
email - tukadmin@thyroiduk.org
print it and highlight Question 6 to show your GP.
You need an immediate increase of 25mcg, retest in 6-8 weeks. Repeat until your levels are where they need to be for you to feel well.
Thank you for your advice support and information. It hasnt been easy when I've been told it's my mental health. And I have found it very hard to digest all the information due to the constant brain fog . I decided enough was enough and have made a private appointment and armed with more information I will win this battle. Thank you again
I am currently on holiday with limited access to internet
So I can’t reply in full
Levothyroxine doesn’t “top up” failing thyroid…..it replaces it
So yes….although we often start on just 50mcg ..,.. dose Levothyroxine should always be increased SLOWLY upwards in 25mcg steps
Blood tests should be repeated 6-8 weeks after each dose increase
Essential to regularly retest vitamin D, folate, ferritin and B12
Frequently necessary to supplement virtual continuously to maintain OPTIMAL vitamin levels
As you have been left woefully under medicated you may need to increase Levothyroxine very slowly at 12.5mcg - so increasing to 75mcg and 50mcg on alternate days initially…..6/8 weeks.,..before increasing to 75mcg daily
Strictly gluten free diet helps or is essential for approx 86% of hashimoto’s patients
Getting coeliac blood test done BEFORE considering cutting gluten out
Only make one change at a time
Most important is getting dose Levothyroxine increased
Getting vitamin levels tested
And coeliac blood test
Suggest you read many of my previous replies to others
Thank you for your reply I will make my priority to get my levothyroxine increased. I will also ask for full blood check including vitamins as I'm not sure if the doctors will accept the medichecks ones.
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
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.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
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