Hi all
My wife has had a Under active thyroid For about 12 months
The last gp doctor report was tsh 1.72.
Last week
She Still has all the symptoms for thyroid
And saying it under Control now ?.
I’m more confused now 🤦♂️
We had a private thyroid test done.
My wife stopped Levo 25mg 24 hrs before.
And no breakfast before the test.
The results are in now.
What do you do in this situation now?.
Because I’m concerned with the things she has to do with this.
Thanks
25mcg is only half the standard starter dose of levothyroxine
Standard starter dose levothyroxine is 50mcg unless over 60 years old
Her results show she needs 25mcg dose increase in levothyroxine
Ft4 is only 13% through range
Ft3 only 32% through range
Helpful calculator for working out percentage through range
Likely to have low vitamin levels having been left on ludicrously small dose levothyroxine for far too long
Ask GP to test vitamin D, folate, ferritin and B12 NOW - and thyroid antibodies too if not been tested yet
Come back with new post once you get vitamin and antibodies results
Thyroid levels should be retested 6-8 weeks after each dose increase
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
Ask GP to test vitamin levels
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)
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 antibodies and vitamins
medichecks.com/products/adv...
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...
The aim of levothyroxine is to increase dose upwards until Ft4 is 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
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
TSH should be under 2
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
Thank you I’ve changed the picture to mine see if you can see what you are looking for in that picture if not I will change it to the different one to see.
You can only post one picture at a time can you on here?. Thanks
Suggest you change photo back (will confuse other members)
Put new picture on new post re yourself
Ok done thank you I was trying to show my test report 🙂
Yes I realised that
I have already commented on it in your previous post
But all these results are pretty meaningless without ranges
Folate looks EXTREMELY low...might be deficient
B12 low
No vitamin D test
After the chat with you last week I booked to see the doctor. But did not get anywhere grr!.
With your help and members I’m
Getting a idea how it works and what to ask for.
And I need to be on Levo for six weeks before a second test and be done?.
I’m going to get back on to the doctor Monday about this.
If they still playing up I will get on to my nhs advocate I have helping me with my back and hip problem.
I have taken notes from you
and thank you for your help with all this
Fabulous.
How long have you been on 25mcg Levothyroxine?
Guidelines are quite clear
Standard starter dose of levothyroxine is 50mcg-100mcg
Levothyroxine doesn’t “top up” failing thyroid.....it replaces it......So it’s Important to be taking high enough dose
We frequently need to start on low dose (50mcg) but dose should be increased upwards as fast as tolerated
Bloods should be retested 6-8 weeks after each dose increase
Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test.
This gives highest TSH
The aim of levothyroxine is to increase the dose slowly upwards in 25mcg steps until on, or near full replacement dose. Typically that’s 1.6mcg per kilo of your weight.
Most important results is ALWAYS FT3 followed by Ft4
Levothyroxine is Ft4 (inactive) and must be converted in liver, gut and cells into Ft3 (active hormone)
For good conversion of Ft4 to Ft3 we need OPTIMAL Vitamin levels
Vitamin D at least around 80nmol and around 100nmol maybe better
Folate at least half way through range (depending on range that’s at least 10 or some ranges at least around 30)
B12 at least over 500
Ferritin often too high due to inflammation or Non Alcoholic Fatty Liver disease (NAFLD)
NHS only tests for and treats vitamin deficiencies
Frequently necessary for patients to self supplement and regularly retest vitamin levels themselves.
Brilliant film
drbradshook.com/understandi...
My wife February. Myself October. Thanks
guidelines on dose levothyroxine by weight
Even if we 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 on, or near 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...
gp-update.co.uk/Latest-Upda...
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.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
BMJ also clear on dose required
It is good you are assisting your wife because if our thyroid hormones aren't working as they should, we -the patient - need support.
25mcg of levothyroxine is a very low dose - unless your wife has a heart condition. Usually our starting dose is 50mcg. An FT4 and FT3 should be towards the upper part of the range not the middle.
The majority of GPs do believe that if our 'results' are within the range that we're on a sufficient dose. Unfortunately they're wrong.
This isn't the case, as we, the patient, needs the results to be 'optimum'.
Your wife needs an increase in dose to bring TSH to around 1 or lower. FT4 and FT3 should be nearer the upper part of the range but most of all your wife's symptoms should begin to be relieved
Also - at the next test ask also for B12, Vit D, iron, ferritin and folate.
Usually we start on a 50mcg of levothyroxine with increases of 25mcg around every six weeks until TSH is 1 or lower and both Frees towards the upper npart of the ranges.
What were your wife's results when she was diagnosed with an underactive thyroid? Has she had VITAMIN D levels tested? What about Iron levels?
Thank you all for your help I’m totally confused by all this 🤦♂️
We both have got this.
So my wife’s doctor says she’s ok and I only
Can get her tsh from there last one was 1.72 so that’s no help.
We got a private blood test and I Picked The Thyroid test for her.
Now that’s saying she do not have a problem 🤯.
We are in the 50s years old now
She’s has no different conditions.
This is so complicated.
I will have to ask for her original blood test results Monday.
Can I have a to do list for what I need to
Ask the doctor for please?.
Also can you recommend a save Please
To buy supplements.
I think we will have to get them at some point.
I’m in the same boat but I need to sort out her first.
Appreciate all your help
Doctors will tell patients that results are "okay" or "normal" if they are within the reference range given for the test.
So your wife's TSH result would be classified by doctors as being "normal" if her result was between 0.27 and 4.2.
And since her TSH is 2.82, which is indeed between 0.27 and 4.2, then her result is "normal".
But what patients will tell you (based on the experience of thousands of members over many years on this forum) we can tell you for certain that if your wife's TSH was 0.27 (bottom of range) she would feel entirely different (and probably better) to how she would feel if her TSH was 4.2 (top of range).
Not only that, but her Free T4 and her Free T3 are likely to be quite different with a TSH of 0.27 and a TSH of 4.2. With a TSH of 0.27 both Free T4 and Free T3 are likely to be substantially higher than if TSH was 4.2.
One thing to bear in mind is that comments from companies like Monitor My Health or Medichecks or Blue Horizon or any others will always give the same or very similar comments to customers/patients as the NHS does because they (the testing companies) are obliged to use the same guidelines that doctors do in interpreting tests.
One thing that is very useful to know is the info contained in this thread :
healthunlocked.com/thyroidu...
Based on the graph the average healthy woman has a TSH of roughly 1.2. Your wife's TSH is substantially higher than that, which would mean her Free T4 and Free T3 are most likely substantially lower than that of a healthy person.
Going back to doctors and the NHS... The NHS almost always tests TSH only, and considers it to be "the gold standard" way of monitoring thyroid treatment. Very occasionally the NHS will test Free T4. Free T3 is almost never tested in hypothyroidism and only very occasionally in hyperthyroidism. And yet patients know that Free T3 is the best indicator of "wellness" in thyroid disease. If Free T3 is high in range or over the range then the patient may feel hyperthyroid or over-medicated. If Free T3 is low in range or under the range then the patient will feel hypothyroid or under-medicated. (By the way - I am generalising and there are always exceptions to everything.)
What the patients on this forum try to find is what is "optimal" for them. I might feel at my best with a TSH of 0.5. Someone else might feel at their best with a TSH of 1.0 or 1.5. Finding our personal "sweet spot" is very important if we ever want to feel well again. But doctors simply won't allow patients to experiment, nor do they pay any attention to what the patient has to say if their results are in range.
Hope that makes things clearer. If you have any other questions, just ask.
Thank you for explaining this for me.
It’s a lot to take in when you are new to this.
My TSH is up at 20.5 and I’m going for my second blood test on the 21st December.
Good luck. Your TSH is terribly high indicating that you are massively under-medicated for thyroid disease. I read your earlier post and was shocked to find out that you'd been started on a dose of 25mcg. I think you need to see a different doctor.
I don't know if you've seen this link yet :
cks.nice.org.uk/topics/hypo...
Read up on Diagnosis, Management and Prescribing Information.
Thank you Sorry for a long post.
After my first post I made a appointment to see my doctor week Friday
And made notes to take with me.
But I did not get any where with them.
Also my ferritin Is high?
On my first and second blood test.
On the second blood test they have damaged my left arm Still not right and painful grr!.
I have got a spinal problem and a failed hip replacement.
And have had horrendous problems with the consultants with this.
I’m also under two different nhs trusts.
I have chronic pain from this all the time.
I feel dizzy a lot of the time and that’s why I had a blood test.
And come back with this.
So I’m booked in for a 3rd ferritin test
On the 21 December.
My plan is to also book my second thyroid test I been taking Levo 25mg
For six weeks by then.
ask them for TSH, T4, T3, Vit D, B12, folate
I think that’s right ?.
And my wife needs a Vit D, B12, folate and ferritin Tests ?.
We both need to up the meds by the sound of it?.
My wife has a what’s the point🤦🏼♀️
Attitude with the doctor
And given up.
But I’ve been pushing with my back consultant. And This massive mess with my hip replacement. The last 3 years of getting Fobbed off and there’s definitely a problem on the mri scan.
I’m just waiting now for a ct scan report to come in.
No way I’m I letting this thyroid get pushed aside.
My wife is not well and feeling horrible all the time.
I’m in so much pain I’m not sure how I’m
Supposed to feel regarding this.
My hands do go cold and I have put on weight over the summer months but
Not doing anything different to normal
Thanks and I’m very grateful For this.
After my first post I made a appointment to see my doctor week Friday
And made notes to take with me.
But I did not get any where with them.
I'm completely baffled! What can your doctor possibly say to justify not giving you a higher dose of Levo? With a TSH of 20.5 you are obviously massively under-medicated.
Also my ferritin Is high?
There are several reasons why ferritin might be high. Ferritin is a measure of your iron stores. By the way, you haven't given us your result for ferritin.
newhealthadvisor.org/Causes...
The only condition that doctors seem to worry about is haemochromatosis, which is a genetic condition meaning that your body absorbs far more iron from the diet than it should do. In cases of haemochromatosis doctors will start paying attention when ferritin is up around 800 - 1000 or higher.
But ferritin also rises, although usually not as much as it does with haemochromatosis, when someone has lots of inflammation and/or an infection. Inflammation is very common in hypothyroidism because so many body parts and organs don't work at peak efficiency with the condition.
You both need to start keeping copies of your own records. You are legally entitled to copies from the NHS, and you need to make sure, as far as is possible, that you get the reference ranges too.
ask them for TSH, T4, T3, Vit D, B12, folate
I think that’s right ?.
Since your ferritin is known to be high it would be useful to have an iron panel done as well. If your ferritin is high and so is your serum iron it increases the chance that you have haemochromatosis which is a condition a doctor should be taking seriously. If your ferritin is high but your serum iron is low then it suggests you have inflammation and a condition called Anaemia of Chronic Disease.
en.wikipedia.org/wiki/Anemi...
And my wife needs a Vit D, B12, folate and ferritin Tests ?.
Yes. I doubt they'll do it, but an iron panel is always helpful in addition to ferritin if you can persuade them to do it. With a TSH of 2.82 she would benefit from a higher dose of Levo too, but getting that can be difficult once TSH is in range.
My wife has a what’s the point🤦🏼♀️
Attitude with the doctor
And given up.
I can completely understand her attitude. I have it myself. I treat myself to maintain as many of my nutrients as I can, and I treat my own thyroid. It can be done. I will involve doctors if my health problem is visible or easily tested for but for any condition for which there are no obvious clues I tend to do what I can to fix them myself. Until you've optimised nutrients and thyroid yourself it's hard to believe how much difference it makes to quality of life.
Not to confuse this post I’m going to change the picture in my post from last week and hopefully you can see the iron numbers in the picture lolThanks
Your last post is this one :
healthunlocked.com/thyroidu...
It doesn't show ferritin that I can see in the picture.
Ok I have changed the picture now.
If you like to look at it.
I can’t keep it all in Focus to do it in one go lol sorry.
Yes that’s the right link.
Ferritin is 324 ....so being male top of range is 400
So ferritin isn’t high
Ok fabulous All they was saying it’s high on my second test.
I wish they explain properly to you
Stops all this confusion.
I know my crp was up also but I’m expecting it to do with my hip replacement.
Thanks
You need to know whether your wife has thyroid antibodies TPO or TgAb. If she does not have thyroid antibodies then other factors such as iron deficiencies and anaemias or inflammation and/or certain medications can cause the Thyroid to underperform.
Whether she has a thyroid condition or not rather depends what was tested and found at the time of diagnosis, before she started taking levothyroxine. Some factors would be, how high TSH was and how low FT3 and FT4 were, whether she has elevated thyroid antibodies, whether she had inflammation present and whether she has deficiencies, anaemias or other coexisting conditions and what other medications she takes.
It is possible your wife's thyroid may be under performing due to underlying factors, other than thyroid disease, that can be addressed. On the other hand if she has an autoimmune thyroid condition, it is likely to progress and the Thyroid usually gradually deteriorates. So, you need to get copies of all blood test results at the time of diagnosis, not just thyroid tests but ALL blood tests in order to determine and understand the basis for her diagnosis.
If thyroid antibodies have not been tested, they need doing along with vitamin D, ferritin, folate and B12 if not recently done.
If a person has no thyroid antibodies and are not taking levothyroxine then they may be fine anywhere within the acceptable lab range. Symptoms may be due to other factors so you need to keep an open mind and check everything out, not just thyroid health.
Ask your wife’s GP for 25mcg dose increase in levothyroxine to 50mcg (the standard STARTER dose of levothyroxine) for someone her age
Also request they test her vitamin D, folate, B12 and ferritin levels. These are likely to be low.
Make sure to get ACTUAL RESULTS and results on these
When hypothyroid we frequently have LOW stomach acid. This leads to poor absorption of nutrients and low vitamin levels
Low vitamin levels tend to lower TSH (which is often all GP will test)
Obviously this results in being left under medicated and hypothyroid
What brand of levothyroxine is she currently taking
Many people find different brands are not interchangeable
Blood test results - not happy!
Accuracy of private blood test. 
Blood test 
Blood Test Results
Can some look at this TFH test
