I have come here because I don't understand why my levels are not improving on a high dose of Levothyroxine. I am taking 150mcg Levothyroxine and to be honest my symptoms reflect my results.
I was diagnosed in 2013 and never felt on Levothyroxine; I was on T3 very briefly but due to costs I was taken off it despite it helping so I am to do the best I can with Levothyroxine.
So my symptoms are mainly constipation, aching in joints, bones in legs fracturing easily, dry skin, dry hair, dry eyes, weight gain, cold intolerance, rumbling in head and ears, periods stopping but were previously heavy. Are these all undermedicated symptoms? Have I been taking my medication wrong? I take it on an empty stomach about 5 hours away from anything else I take/have taken in the past and 2 hours away from food and coffee.
Thanks in advance.
TSH 5.2 (0.2 - 4.2)
Free T4 12.9 (12 - 22)
Free T3 4.1 (3.1 - 6.8)
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Hollie78
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You are undermedicated. Most people need their TSH around 1 or slightly lower to feel well. It sounds like you are taking levothyrxoine the correct way. Do you have thyroid antibodies? Have you had vitamin levels tested? Many people with thyroid conditions have low vitamin levels that prevent them feeling the full benefits of levothyroxine.
Did you feel better on T3 or did you still have symptoms?
You need 25mcg dose increase and retesting in 6-8 weeks
Hundreds have had T3 stopped, completely against guidelines. Who stopped it?
When T3 is stopped like that vitamin levels crash right out
Have you got recent tests for vitamin D, folate, ferritin and B12
Post if you have them , get GP to test if not done
Do you have Hashimoto's (high thyroid antibodies)?
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
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)."
You can obtain a copy of the articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.
Read this favourable assessment from Patients Association
Well, I don't suppose the Endo has thyroid disease so what does he/she know? There is no evidence that T3 is harmful and lots of people say it helps them. levothyroxine has been poor quality in the UK for at least the last 10 years or until 2015 so T3 helped lots of people who felt unwell on the unreliable T4. Some people need it due to poor conversion. Your body has to convert T4 to T3 and some people are inefficient at doing this for a variety of reasons.
No I don't think the endo knows at all. I took a whole day off work to go to the appointment to see him and I felt like it had been wasted sitting in the waiting room and then to be told nothing different from the telephone consultations.
Many Endos seem to know nothing about levothyroxine and thyroid antibodies, vitamins and how all these things work in consort for thyroid patients. You'll get more useful advice from this forum than from most Endos.
If the Endo thinks that levothyroxine is so great then ask him what the outcome of the MHRA 2013 review and report into levothyroxine was. I bet he's not even read it.
If he has read it then he should know that the NHS was supplying patients with variable quality levvothyroxiine that was making them ill and then blaming the patients by telling them they had mental health conditions when all along it was likely the rubbish quality of the levothyroxine. So I think you deserve to have your T3 reinstated if you want it since you probably had to put up with years of poor quality levo and lots of symptoms as a result. There is no guarantee the drug companies have ironed out all the problems with levothyrxoine.
Nevertheless, I would take SlowDragon 's advice because neither levo nor T3 work properly if your vitamin levels are too low so check and address any deficiencies first.
Unfortunately T3 was stopped because of the ever increasing cost to the NHS. Yesterday the truth finally came out in the news . Some people buy it from abroad, although more risky with regard to quality control. Perhaps somebody else on this forum can give you a link in a private message. (I have never taken T3 myself)
Hi, I’m no expert and am new on this site. I’ve been undermedicated for yesrs because I haven’t been able to tollerate thyroid meds. Long story. Anyway, I used to take the T3 name brand cytomel years ago. I’ve been trying to take various compunded mixes of t4 and t3. I asked my pharmacist to only compound the t4 and please give me cytomel for the t3. I was told it was too expensive and that they don’t ever buy it. Instead they get one of the generics so I tried that. It only cost $12. with my insurance. I only took half a pill today and already feel so much better! I tend to be uber sensitive though. With minimal meds my TSH was 5.9. Switching to T4 only caused my reverse t3 to go up. Which I think means I don’t convert well and my body couldn’t use all the T4. I think I understand the concept. Anyway, look into all the different t3 generics to see what they cost. If you need t3 in order to feel well, not sure anything else can take its place.
FYI, I have been determined to get my thyroid problem solved and have switched doctors so many times I can’t keep track. Sadly, the endos I’ve seen have been the most pig headed and arrogant. I’ve spent a ton of time researching and reading and taking lab tests and this site has been AMAZING!!!
I would highly suggest self medicating on T3 ... Your results and symptoms are similar to mine when on T4 .. Looks like you have a very low conversion ratio and/or high RT3 production ... Inbox me and I can give you a link to where you can get 600 T3 pills for £70.00 and tell your GP & Endo where to go VERY loudly in front of everyone ...
Essential to check vitamins first and supplement to get to good levels and get TSH nearer one by raising Levo dose first.
Plus very likely need to be strictly gluten free too
Then look st adding T3 back in.
Either self medicating or a T3 friendly endo will prescribe. Even private prescription enables access to cheap EU T3 (£20-£30 for 100 tablets) if can get NHS option
hi - so can I get my endo to prescribe it and I can get it from Europe ? - how does that work in practice ( sorry to be thick ) but I'm seeing my endo in December and he has already said he thinks Id do better on some T3 but I've no idea how to source it via prescription !!
based on my personal experience and quite extensive review of the research I would dare to say you are possibly overmedicating on T4 and possibly have conversion issues of T4 to T3 either because of excess T4 or a genetic trait. One way to test this is to Swap some of your Levo dose for desiccated natural thyroid extract (DTE), a bit trial and error and best done very gradually. Suggest aiming for 50-75 µg Levo and whatever dose of DTE gives you about 6-9 µg T3 and about 30 µg T4. T3 is said to be about 3X as effective as T4 in these types of replacement calculations but beware taking too much unless under endocrinologist prescription to treat a more specific pathology.
As others have stated, you are DEFINITELY under-medicated. ANYONE would feel terrible with a TSH of 5, a Free T4 at the bottom of the range and a Free T3 below the middle of the range. As a result, your symptoms are easily explained. Ideally, get your TSH around 0.5 - 1.0, Free T4 into the middle of the range and Free T3 in the top 1/2 - 1/3 of the range. This is sometimes easier said than done however.
I'm surprised that your numbers are so bad on 150mcg of levo. This suggests that you may not be digesting it properly due to poor digestion or that your medication is not of the advertised potency. Also, levo is typically dosed by weight. Are you average-ish weight? If so, something else is up. 1.7-1.8 mcg per kg of weight is the most common dosage for levo. For me, 1.8 mcg of levo per kg of weight brings my TSH down to around 0.5 and brings my Free T4 above mid-range.
Your options:
1. Take more levo. You are not on too much levo if your numbers are where they are. Until your Free T4 goes past the middle of the range and your TSH goes below 0.5, you don't need to worry about being on too much levo. Simply increasing your dose to say 175-200 mcg may bring your TSH down to around 1.0 and bring your Free T4 and Free T3 into the middle of the range.
2. Add some form of T3. Personally, I like NDT for various reasons, but many people take too much NDT. NDT contains both T3 and T4 so you may have to reduce your levo dose a bit. I am currently experimenting with the approach that the "Tired Thyroid" book (excellent book, btw - I'd highly recommend you read it) advocates which is 1 grain of NDT + roughly the amount of levo equal to your body weight in kg (75 mcg for me). This will give me ~113 mg of T4 per day (1 grain of NDT = 38 mcg of T4) and 9 mcg of T3 per day (the amount of T3 in 1 grain).
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