I am using a 100mg of levothyroxine and have been on increasing doses for the past 10, or so, years
My latest test readings appear to be following a strange trend
My TSH value is 4.3, it has been higher and lower but it usually around this level
My T4 value 19.7 and looking at the trend there is a general rise in this value over the last 4 years
Should the rising value of T4 be something that I should be worrying about ?
Should the rising value of T4 be something that I should be worrying about ?
If you're increasing your levo the FT4 is supposed to rise.
The TSH, on the other hand is too high. I suspect you are a poor converter to have such a high FT4 and high TSH. Do you ever get your FT3 tested?
Thank you for the reply I think an FT 3 test may be the next move. My standard NHS test only seems to cover TSH and T4 ?
Not everybody get T4, from what I've heard. They probably did it because your TSH was high. But the NHS is dead set against testing FT3 - doctors wouldn't understand the results if they did! So most people get private tests done to know what their FT3 is.
My GP tests TSH, T4 and T3. Just as well! My T4 is well above range, my TSH is practically non-existent but my T3 is within normal range and I feel fine. How can GPs get the full picture without all three measures? If GPs just went by my TSH, my levo would have been much reduced and I would very quickly become very ill.
Well exactly. They can't get the full picture but they think they can. They were taught in med school that the TSH tells them 'all they need to know'. But, of course, it doesn't. And a hell of a lot of people are under-medicated because of that. But you can't tell them! They don't want to know.
Also, very often even if the GP orders FT4/3 the lab refuses to do it. And labs can over-rule GPs. It's total madness. Surely you've seen people complaining about all that on here, no?
yes, I constantly read that TSH seems to be the only measure...crazy. How can GPs know about poor conversion unless they have all measures?
They don't know what poor conversion is, anyway. They don't know and they don't care for the most part.
I think that GP put them selves in a difficult position they are treated by many people as almost God like creatures who know everything and many GP accept this. There is a joke I heard that covers this "what is the difference between God and a GP" answer "God doesn't think he is a GP"
Before anyone gets upset I think my GP does a great job under difficult conditions, I wouldn't swap with him. Medicine is a big subject its impossible as a GP to know everything about every aspect of medicine.
I was a Lawyer and I knew that my knowledge was not encyclopaedic I was always having to look things up as well as keeping myself up to date. When I spoke to my GP about T3 it was clear he didn't understand it well and I didn't pursue the question. I would have preferred the GP to have said "I need to do some reading on this to refresh my memory and I will come back to you" however most GP have difficulty accepting they don't have an encyclopaedic knowledge because of the esteem in which they are held.
Yup, agreed. But 'I don't know,' seems to be the hardest thing to say. They'd rather just invent something stupid off the top of their heads! You can see it in their eyes.
When I was teaching, I used to say to my students 'you can't possibly know everything, so the important thing is to know where and how to find out'. And in those days, we didn't have internet! Now, the possibilities are endless. All the knowledge is out there, you just have to look.
I agree up to a point but hypothyroidism is extremely common, there are over 2 million of us on Levo in the UK and yet many doctors are extremely ill informed, and what's worse too pig headed to admit they are out of their depth, which is worse.
If Hypo was a rare condition then GP's could be forgiven for their ignorance. I agree GP's have a tough job, and its not something I would want to do, but their treatment of a common condition leaves a lot to be desired. And its patients like us who are left to pick up the pieces.
I am exactly the same! My TSH is suppressed (and has been from the start), my T4 is just above the range and my T3 is around 75% through the range. I feel good and would not change anything at all. I am doing my own testing and send the results to the GP as an advisory curtesy, telling them that I feel fine and that there is no need for a change! They seem to have accepted it over the years. One GP many years ago insisted on reducing my levothyroxine (my T4 was still 75% through the range by then) and I became very unwell. After a few months I went back to my previous dose and will not budge again!
I have found I have to be fairly insistent with medics.....even an endo....and explain that I'm fine.
“The TSH is too low”. What am I missing here? TSH does not look too low to me. Poor converter yes, I see that.
Oh, gosh! Brain f**t! Thank you for pointing that out. I'll correct it immediately. 
Ok. Thanks for that grey goose.
You're welcome.
I did have a conversation some time back with my GP about TSH, T4 and T3 values and their relationship, I did get the impression that he would have rather discussed the weather. 😂
🤣 Yes, probably totally out of his depth!
So what was the conclusion of your conversation? Did he tell you that T3 is irrelevant, or some such rot? Several times I've mentioned T3 to various doctors and they've said, 'what's that?' 🤣
Yep! My GP response to T3 was 'its irrelevant'! So I zipped it 🤐, left+got the Thyroid UK list of Endos! Best decision made!!👌
I wonder if your GP is aware that his body makes T3 all the time, so how it is irrelevant. The brain also needs a lot of T3 to function. Maybe that's where he is going wrong, and might explain why his brain isnt working properly. Sheesh. These people are actually dangerous.
My private Endo asked for some blood tests to eliminate any other autoimmune issues, but didn't ask for T4, T3 or TSH as that was done the previous month. However, the surgery included it+before you could say 'Bobs your uncle' I had a letter to contact GP to discuss thyroid bloods! Had to go to surgery to ask@reception re results of other bloods requested by Endo+said I wouldn't be attending GP request as under Endo, which was included on my records! What is up with these ppl? It also says on my records to ignore the suppressed TSH! Can't these medics read either!!!!!
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
is this how you do your tests
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 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
Are you in U.K.?
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
is this how you do your tests
thank you for the reply
Yes that’s how I have always done my tests and I am in the Uk
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
I've had tests about a decade apart with TSH above 4 and declared to be OK at the same surgery, and assume hundreds of patients have been left feeling unwell over that period.
Should you be concerned about a rising fT4 level? Search for Doctors, please do not increase the T4 dose in a “poor converter” at:
thyroidpatients.ca/2019/06/...
You'll need to know both your fT3 and fT4. I've found GPs and consultants amenable to requests for fT3 to be tested on a few occasions; phlebotomists weren't, I suppose because the desiccated thyroid extract I was taking at the time didn't feature on their checklist.
WOW! Never seen this before and the date 2019. Does any medic use this in the UK?
It was 2018 when I explained to my GP my reason for wanting to add desiccated thyroid extract, because my fT3/fT4 was below 0.22, mentioning Dr John Midgley (the late, lamented "diogenes") as a key figure since the early 1980s, who had contributed to the SPINA-Thyr software.
It really looks as though most GPs think it's "safest" and even "best" for hypothyroid patients to be kept with their TSH a bit below the upper limit. Yet the GPnotebook entry says:
(The) aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary.
Crikey SBT I am on total overload with this information. As I am always banging on about my inability to take T3, I take a closer look now at posters experiencing all sorts of anomalies. From your references I have found mention of TRIAC. It looks like this can be given (possibly) instead of T3. It sounds like it does a similar job to T3 but is much milder effect on the heart. Unfortunately the paper is 60 pages long and I need to print it! I just can’t be sure I am ‘getting’ it otherwise.
I hope I am not wrong in this as I am pretty near despair (again).
Ah unfortunately mainstream info says avoid this stuff. Dang!
The Wiki article explains why "avoid" - primarily its use (misuse!) as a weight loss drug.
Tiratricol
en.wikipedia.org/wiki/Tirat...
It has hardly been studied - I could only find a fairly modest number of papers - and many of them are strictly non-human:
europepmc.org/search?query=...
You are so kind helvella. I have had a quick look and I think I am going to have to develop a completely new language to get to the bottom of all this info. Obviously there is quite a lot of genetic stuff associated with this ‘view’.
Yesterday I almost asked online here whether anyone on the Forum had a ‘simian crease or line’. It’s a genetic influence, best known for its connection to Down Syndrome and also that recognised condition’s connection to hypothyroidism. I see Hillary Clinton has a Simian crease and she also has hypothyroidism, as I have.
I tried to get a famous author to take the opportunity to talk more about this in her upcoming book but apparently I was too late as she has already covered the Simian crease angle. It would have been a great coup for hypothyroidism, I think.
Anyway back to my studies.
I guess the non-human papers might cover the simian crease.
I had to look it up:
en.wikipedia.org/wiki/Singl...
You've revived a memory about the ear lobe crease (Frank's sign).
I have noticed similar in aging friends. I think a lot of it is down to loss of collagen. However I know it is a recognised connection with heart disease.
Similar to me Pincerna. My last blood test (private through medichecks for full picture) showed tsh of 4.31 with ft4 18.5 but ft3 only 3.8. Over four years of treatment with Levothyroxine I have a pattern of high normal ft4 with elevated tsh - and remain symptomatic. Increasing my Levo dose any higher than my current 75/50 mcg (alternated daily) puts my ft4 over range without symptom relief. A sympathetic GP led only to a rejection to her referral from endocrinology. I am currently trialling the introduction of Liothyronine (t3), privately sourced from Roseway Labs, alongside my Levo.
Good for you. I hope it works out well. The fact that GPs do not seem to recognise high T4 is important. Well they won’t know because generally they don’t test it after diagnosis. This is the level of their ignorance. I am so glad that I have discovered people who have found themselves in this position (maybe this is just a recent realisation because I did not notice before). My TSH always (so far) is within range but as we know on the Forum, not nearly as important as feeling well!
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