Hi everybody! I’ve just got my September results back today and I would be very grateful for your thoughts and recommendations.
A bit of background; After my last Medichecks results in May, I spoke to a GP about my low free T3 result and my symptoms (including eyebrow hair loss.) She lowered my levothyroxine from 100mcg to 75mcg, because she said hair loss was not affected by T3 but is due to my T4 being too high at 18.5 pmol/l (12 - 22).
Suffice to say my thyroid labs and symptoms are now much worse. I will attach both my May results (on 100mcg levothyroxine) and todays September results (on 75mcg levothyroxine).
Two years ago, I did try to increase my 100mcg levo dose to 125mcg…I struggled on this dose as it left me feeling really uptight and stressed out but with no positive symptom improvement. I gave up on the 125mcg dose after 6 weeks because of my negative emotional reaction to it.
I think I may be a poor T4 to T3 converter but appreciate low folate etc could be complicating this issue. I have been working on improving my nutrient status but intend to increase folate sup to about 900mcg of methyl folate per day as my folate has been consistently low.
Please could you suggest a plan of action?
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limonene7
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Somebody is going to come along soon and give you lots of good advice, but I just had to say
"She lowered my levothyroxine from 100mcg to 75mcg, because she said hair loss was not affected by T3 but is due to my T4 being too high at 18.5 pmol/l (12 - 22)."
WTF! Has this Dr actually qualified? She really needs to apologise to you for getting it so wrong.
Thank you, Nellie237! I know, I couldn't believe what I was hearing but she was on loud speaker (it was a phone consultation) and my husband heard her say it too! She actually told me to go and see a hairdresser about shampoos! She said there was nothing she could do to help me with my balding eyebrows. TBH, the doctors who write the follow up report on my lab tests have been far more helpful and seem to be more knowledgeable than my local GP's have been so far. x
I agree with SlowDragon that you need to find a new GP surgery. This one will probably want to repeat the TFT, and will either
A) Dismiss FT3 as irrelevant (and the NHS lab won't test anyway)
B) If she goes out of her way to ensure FT3 is tested, you'll have upped your dose and will probably scrape through the bottom of the range........so, dismissed.
Either way, you won't get where you need to be.
However, I understand that TSH is widely accepted as being a very accurate test. I'd love to hear her explanation for her very bad judgement in directing you to reduce your dose, resulting in such a negative impact on your health, when there were clearly no indications to reduce in your earlier results. I really can't see how she can wriggle out of that one, bar an apology.
It does look like your conversion is low. I think GP's need to know what they're talking about to convince an NHS Endo to accept a referral though.....so, you'd be on a hiding to nothing with this one.
"She actually told me to go and see a hairdresser about shampoos!" How inappropriate and unprofessional. Trouble is.......when they say things like this, we are usually too stunned to respond.
"She said there was nothing she could do to help me with my balding eyebrows." Because this isn't the most obvious 'classic' symptom.....good grief!
I'm sorry that you've received such lousy treatment, and you must be feeling really rotten, but you'll get there. 😊
Thanks Nellie237! Luckily, there are a few GP’s at my practise and I know of at least one that is more helpful on the Levo front and is happy to go on both lab results and symptoms so I am going to try and speak to him next time, if possible. It's quite difficult at the moment because its currently all done on a triage system and you don’t get a choice so its pot luck who you speak to. The levo ordering I do through Pharmacy2U and as long as it continues to be approved by the practise, it should hopefully be ok for me to increase to the levo dose I had before.
Nellie, et all.... I agree wholeheartedly... Basically these people of this ilk know absolutely nothing about thyroid issues and the endocrine system at best.... What do you expect with one afternoon's tuition!!
Well, what an utter twit your GP is, look what a mess she's made by lowering your dose of Levo, now she's managed to increase your TSH and reduce your FT4 and even managed to send your FT3 below range. T3 is the most important hormone, every cell in our bodies need T3, low T3 causes symptoms.
You need your Levo dose raised immediately, retest in 6-8 weeks. 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 if that is where you feel well.
Your Folate is low at 4.58 (3.9-19.45), it should be at least half way through range.
B12 is higher than they can measure.
Are you taking a B12 supplement?
Vit D isn't bad although the Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L.
Ferritin seems OK.
YourTPO antibody results tell us you have Hashi's, did you already know that?
Thank you, SeasideSusie! Yes, I will start raising levo in the morning.
Yes, I am taking multi B complex which includes methyl B12 and methyl folate but I seem to be getting too much B12 but not enough folate so I plan to cut the multi B dose in half but add in 500mcg of methyl folate, so that I will be getting approx 900mcg of methyl folate per day until my readings are much better. (NICE guidelines says the loading dose for Folate-deficient megaloblastic anaemia is 5mg/day for 4 months but I don't know if this is safe for me without guidance?)
Yes, I guessed it was likely Hashi's when I was diagnosed 3 years ago but confirmed it with my first Medichecks test last December.
NICE guidelines says the loading dose for Folate-deficient megaloblastic anaemia is 5mg/day for 4 months but I don't know if this is safe for me without guidance?)
Have you had a full blood count and know that your blood cells are abnormally large to diagnose this?
Folate level below 3ug/L is used as a guide to indicate Folate deficiency and 3–4.5ug/L may be interpreted as suggestive of deficiency and not diagnostic. So your level of 4.58, whilst low, is not diagnostic. I personally wouldn't be self supplementing with 5mg of Folate. I raised my bottom of range Folate level to top of range in 2.5 months by taking 1 x capsule of Thorne Basic B Complex daily, it contains 400mcg methylfolate.
Funny you should say that. Three years ago when I first suspected I had a thyroid issue, I had a broad blood test with Werlabs. My results had a few red flags and one of them was an elevated MCH. I didn’t take much notice at the time as the GP on the report wrote… “Your MCH (measuring the red blood cells’ average haemoglobin content) is marginally high, but since the other markers for your red blood cells are normal, and the elevation is minimal, this is most likely a normal variant with no connection to ill health.” …However, this week, after pondering about folate, I googled MCH and folate, and Pubmed says “Elevation of MVC and/or MCH suggests macrocytosis”. ( ncbi.nlm.nih.gov/books/NBK5... )
So, since my folate was low then too, I have since been wondering if I was or I still am, possibly bordering folate anemic. Thanks so much for letting me know how long it took to get your folate up and the dosage, I think I’m going to keep to folate doses similar to what you took. Thank you for all your help, SeasideSusie, I really appreciate it!
I will post my pre thyroid diagnosis Werlabs results from 3 years ago here, just in case it is relevant.
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
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
As you have Hashimoto’s are you on absolutely strictly gluten free diet
If not, request Coeliac blood test BEFORE considering trial on strictly gluten free
Thank you SlowDragon! The information you have provided here is really helpful to me!
Yes, when testing, I always leave 24 hours between blood draw and levo and I book the test as early in the morning as possible..with Medichecks the earliest is 9:30am.
The info re Dr Toft is extremely interesting! I did not know I should be aiming at such a low TSH on levo but I will now aim for his recommendation range.
I’m a bit confused about this bit… ‘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).” …Does he mean that with a strongly suppressed TSH, I would need to test for ‘total serum T3’ as well as ‘free T3’ ?
Yes, I’ve been strictly gluten free since I found out I was hypothyroid. I assumed it was likely Hashi’s and so I researched and found Pubmed info says the evidence for a link between autoimmune thyroid disease and gluten is now overwhelming. I don’t want another autoimmune disease so I am trying to do whatever it takes to avoid it.
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.
Thats brilliant! In that case I will start with 100mcgof levo for the next few days and then start raising to 125mcg. Once on 125mcg, I'll wait 6 weeks and re-test. Thank you so much for this!
Thank you very much, JAmanda! I wondered if that might be the case. I’m going to follow the advice in this thread, test again in 6 weeks to see where I am and take it from there. Hopefully my nutrient status should be better then too.
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