Could someone help please as I am struggling to understand what my results mean.
I already have pernicious anaemia (diagnosed 20 years ago) and issues with Ferritin levels but am now suffering with worse than normal tiredness. I have been on 25mcg of Levothyroxine for 10 years. My recent results show TSH of 2.22mu/L (ref range 0.35 -5.00) and a free T4 of 10.7 pmol/L (ref range 9-22). I read somewhere that once you are taking Levothyroxine the TSH doesn't mean much. Is this true? Is the low free T4 likely to be a cause for the tiredness even though the TSH is in range?
Any help would really be appreciated as the tiredness is overwhelming.
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Mistri
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Oh my goodness. I think your GP may be in the running for most ignorant doctor of the year, if not the decade.
25mcg Levo is a starter dose for children, the elderly and those with a heart condition and you've been on it for 10 years! Normal starter dose is 50mcg for adults, retest after 6 weeks, increase by 25mcg, retest 6-8 weeks later, increase by 25mcg, repeat until levels are where they need to be for the patient to feel well.
For your GP's information - NICE Clinical Knowledge Summary for Initiation and Titration of Levothyroxine:
Management > Levothyroxine > Prescribing Information > Initiation and Titration:
How should I initiate and titrate levothyroxine?
•The dose of levothyroxine (LT4) should be individualized on the basis of clinical and biochemical (thyroid function tests) response. Treatment must be monitored regularly to determine an adequate dose and to avoid both under-treatment and over-treatment.
•The initial recommended dose is:
◦For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
◾This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
◦For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.
•Once a stable thyroid-stimulating hormone (TSH) level is achieved and an adequate dose determined, arrange follow up to check thyroid function tests (TFTs) at 4–6 months and then annually.
**
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well.
Further information:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine 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 the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
Thyroxine Replacement Therapy in Primary Hypothyroidism
TSH Level .................. This Indicates
0.2 - 2.0 miu/L .......... Sufficient Replacement
> 2.0 miu/L ............ Likely under Replacement
With your current results of TSH of 2.22mu/L (ref range 0.35 -5.00) and a free T4 of 10.7 pmol/L (ref range 9-22) you need an immediate increase of 25mcg Levo, retest in 6-8 weeks, repeat until your levels are where they need to be for you to feel well.
I read somewhere that once you are taking Levothyroxine the TSH doesn't mean much. Is this true?
Yes, it is true but doctors refuse to believe that and tend to generally just dose by TSH and if it's anywhere within range, even at the very top, they think everything is alright. However, TSH is a pituitary hormone, not a thyroid hormone. The pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone).When there is not enough thyroid hormone (natural or replacement) TSH will be high.
If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
So once on adequate thyroid replacement the TSH is going to be low. It's the actual thyroid hormones - T4 and T3 that matter, and the results of the tests FT4 and FT3 that tell us what we need to know.
Is the low free T4 likely to be a cause for the tiredness even though the TSH is in range?
Definitely. Your FT4 is just 13% through the range which is dire, most people need it around 75% through range. If you are still symptomatic when TSH is down to around 1 or below and FT4 is around 75% through range then testing FT3 is important because if you don't convert T4 to T3 then FT3 will be low, it's low T3 that causes symptoms.
Thank you for such useful info. This really helps. In some defence of my GP I was originally started on 50mcg but suffered really bad headaches so the dose was dropped to 25mcg. It has stayed there ever since and I have always been caught up in trying to increase my Ferritin (which dropped to only 6 at one point) and keeping my B12 high, never giving my Thyroid results another thought. Its only now I am permanently exhausted that I've started considering it.
I am super impressed and grateful for the help given here. I just have to do battle with my GP now!
My ferritin is better at 30; I'd like it higher but its a difficult battle with side effects of various iron medications. My Vitamin D was very low but I've supplemented well and now have it at 70 (having been about 20) so that's gone well. I have regular B12 injections so thats ok. It looks like I need to carry on working on my iron, whilst now getting my thyroid medication sorted. The delights of auto immune disorders and their associated problems get a bit much sometimes.
Once you are taking levo, the TSH is only useful if it is high. Yours is too high. When you are taking levo, it should come down to 1 or under. You need an increase in dose. I find it quite shocking that your doctor has left you on 25 mcg for all that time. It isn't even a normal starter dose, and should have been increased by 25 mcg after six weeks. Have you ever tried asking your doctor for an increase?
Your FT4 is only 13% through the range. It should be more like 75%. You have been grossly mistreated and neglected, I'm afraid.
Such a low FT4 would probably not be directly responsible for your fatigue, T4 is mainly a storage hormone. It has to be converted to the active hormone T3. As your FT4 is so low, your FT3 is going to be low, too, and that would cause your fatigue.
The TSH doesn't make you feel anything, whether it is high or low. It is just a signal from the pituitary to the thyroid to make more hormone. When your thyroid cannot respond, the TSH gets higher, and we need the right dose of levo to bring it down again.
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.
Come back with new post with results, 6-8 weeks after you get 25mcg dose increase in Levothyroxine and have got bloods done
Hi hope you start to feel better when you address some of the excellent advice. @SlowDragon is right about Teva, if this is the brand you were prescribed, I couldn't tolerate as I had a dreadful headache. Good luck on your journey.
Sat here with my eyes and mouth wide open in pure shock and disbelief! As everyone has said, definitely super under active thyroid and I think iron deficient as well.
The 25 mcg is normally the dose, they increase you by until you are on the right dose for you.
I was on Teva, but could not tolerate it, so now on Morningside. They do try to fob you with the Teva brand as it is the cheapest on the market and easiest to get, even my Pharmacist has confirmed that. Need to get Pharmacy to yellow flag it on your records as a "No no".
I have mentioned it numerous times, but my ex stupid GP, once reduced my meds from 200 mcg to 75 mcg as "she knew better, because she is a Dr" (not) and I became very poorly and I mean very poorly.
Around that time, I found out that I was B12 deficient. Vitamin D with both PA and had iron deficiency. (no longer the latter iron deficient since the menopause)
Definitely a second opinion and new blood tests. In my case it was my Gyne who referred me to see a Endocrinologist. I am now back on 200 mcg which I call my natural dose and 20 mcg of T3. My highest dose of T4 was 250 mcg, but I was having trouble with my eyes, burning sensation and headaches, just did not feel right on that dose.
Please let us know how you get on and good luck. Take care x
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