I would love some advice, I was diagnosed with under active thyroid after having my 2nd child, I have been on 75mg Levothyroxine for over a year and now my consultant has reduced my medication to 25mg to see if my thyroid kicks in. Since about a week after taking the reduced amount I have felt awful - fatigue, muscle aches, cold and generally feel ill.
I have had my bloods done recently and all have come back within range, I have been to my gp (not consultant has he has told me that as my blood results are within range there is nothing he can do) and has tested for b12 and iron levels and all have come back normal. My thyroid levels are:
TSH - 2.7 (range is 0.40 - 5.00)
T4 - 12 (9.00 - 19.00)
Is this normal to feel awful when levothyroxine is reduced? The only thing that has been flagged for the blood results from my GP is that Lymphocyte count is on the low side at 1.4 (range is 1.5 - 4.0) but the GP says there is no further action required.
Thank you for reading and any help/advice you can give.
Thanks
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Motherdonkey123
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I have been on 75mg Levothyroxine for over a year and now my consultant has reduced my medication to 25mg to see if my thyroid kicks in.
I am trying very hard not to swear here 🤬. What a stupid thing to do. Dose reductions, for whatever reason, should be no more than 25mcg. But why experiment on you, if you've been on Levo for over a year and your hypothyroidism was transient due to childbirth, I think you might have known before now. One wishes that the consultant has a chronic condition and their medication was severely reduced just to see if things kicked back in, see how they like it!
I have had my bloods done recently and all have come back within range, I have been to my gp (not consultant has he has told me that as my blood results are within range there is nothing he can do)
TSH - 2.7 (range is 0.40 - 5.00)
T4 - 12 (9.00 - 19.00)
They may be in range but they are sub-optimal. You are undermedicated. The aim of a 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. You can see that your TSH is far too high and your FT4 is only 30% through it's range. No wonder you are unwell.
I would do one of two things, whichever you are most comfortable with, i.e speak to your GP or the consultant and give them the following information (if you want to give the websites you will need to click on the link and get the URL, the links below don't show the full details):
Fine tuning of the dose could be necessary in some patients
* 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
How can blood tests be used to manage thyroid disorders?
.....
Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal.
There are also certain patients who only feel better if the TSH is just above the reference range. Within the limits described above, it is recommended that patients and their supervising doctors set individual targets that are right for their particular circumstances.
.....
Also, 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).*"
You can obtain a copy of this article from Dionne at ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight Question 6 to show your GP.
You need an immediate increase in your dose of Levo, 25mcg now, retest in 6-8 weeks. Repeat until your levels are where you need them to feel well, if your TSH need to be very low to give you decent FT4 and FT3 levels and your symptoms abate then so be it. TSH is not a thyroid hormone, it's a signal from the pituitary, the FT4 and FT3 are the thyroid hormones and this is what is important. Be prepared for a battle because most endos and GPs know very little about treating hypothyroidism, and most endos are diabetes specialists.
It might be an idea to ask for your lymphocyte level to be retested at some point, low lymphocytes can make it difficult for us to fight infection so you don't really want it too low.
has tested for b12 and iron levels and all have come back normal.
What are these "normal" results. Normal just means they are within range but we Hypos need optimal levels. Can you post these results with their ranges and the unit of measurement for B12. Were Folate and Vit D also tested, they should be.
I’m not surprised you feel awful; you definitely need an increase in Levo to get your blood levels optimal. I only felt well when my TSH was nearer 1 and T3/ T4 higher in range. I feel empowered by testing my thyroid and key vitamins privately & posting results on the forum for advice. Having optimal vitD, ferritin, folate & B12 has helped me enormously, along with being gluten free.
Bloods should be retested 6-8 weeks after any 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 if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
How long since levothyroxine dose was reduced?
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 thyroid antibodies or all relevant vitamins
I must say you’re the 2nd post today I have seen with absolutely incompetent medical professionals in charge of their care. What is going on at the moment??? Honestly wonder how they get to hold a job down!!
You have had some really informative replies here and I just want to say hang in there. It’s not you. You’re symptoms are real. You are undermedicated and poor you! I bet you feel rubbish. I sincerely hope you manage to negotiate an increase quickly. X.
the issue here is ..."is it post partum thyroiditis , which might recover within maybe 12/18months ish of birth, or is it a permanent state of autoimmune hypothyroidism... and how do we tell the difference ?"
Despite looking i've never found any clear information about how to tell the difference once someone has been started on Levo.
Some questions for general discussion, cos i don't know the answers :
# Does post partum thyroiditis actually have TPOab/ TGab antibodies ?
# Does the level of TPOab /TGab antibodies found in post partum thyroiditis(if there were any) have any bearing on the chance of it getting better spontaniously ?
# if taking Levo, will the recovery be evident as fT4 levels increasing on the same dose, or will the act of taking Levo mean it is not apparent because thyroid is not getting a chance to be stimulated to work by itself (because TSH is being kept lower due to added T4 from levo) ?
# What is the recommended timescale in post partum thyroiditis (if it was treated with Levo )for removing Levo to see if thyroid will work by itself ?
# What is the protocol for doing this... remove it all in one go or gradually taper dose down ?
# Are there patients left on Levo for life who's thyroid function would have normalised in the year or so following birth if it had been allowed to ?
# Does anyone know of anyone who had Levo successfully stopped after being on it 'post partum' and how/why /when was it stopped.
# If someone is doing well on Levo a year after the birth , what is the risk /benefit of trying to see if thyroid is able to return to fully 'self functioning'
# If Levo is removed to see if thyroid has normalised.. how long is needed off levo to tell if it has? ...what would TSH /fT4/3 do ?... would TSH initially go high , but then settle down once thyroid has been prompted to produce more fT4 again ?.... How long would the patient suffer hypo symptoms while this was happening ?
My autoimmune hypothyroidism became evident after the birth of 2nd child . but i've never had to worry about "was it temporary or was it permanent"... because my thyroid wasn't tested until 4 yrs had elapsed.. so it clearly was permanent.. but i've always wondered how they are supposed to assess the chance of thyroid normalisation in post partum thyroiditis if it has been treated with Levo.
I've never found any clear answers when looking for research evidence on this subject.
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