Was diagnosed last year with TSH of 25. Started on 50mcg levothyroxine and every 3 months gone up by 25mcg. Now on 100mcg. I weigh 82kg.
The GP says my TSH at 1.3 is perfectly normal and not the reason for my symptoms. She refuses to increase my dose past 100mcg and says is going to write to an endo and will get back to me next week. Not a referral btw, just to ask the endo if she can give me 112.5mcg a day. I'm worried if they refuse I'm just going to be left. I read out the info from thyroid UK website as been lurking here and doing my research but she just repeats that TSH is the most important marker and mine is saying everything is fine.
I had private bloods done in April from medichecks. First time I've tested T3 and T4 myself and they were -
TSH - 1.34
T3 - 4.64 (3.1-6.8)
T4 - 16 (12-22)
Am I right in thinking there's room for an increase if I still have symptoms. Or am I doing the wrong thing pushing for an increase. I have gained 2.5 stone in the last 3 years.
I did test vitamins but can't find the exact figures but I've been on B12, B complex, D.
D was 75. Active B12 I think 80. Ferritin was in the 70s.
I'm just so tired all the time. Still cold. Dry skin. Brain fog. So exhausted battling. I feel slightly better on 100mcg but still not right but I'm being made to feel that my thryoid is not the problem. Oh and I have hasimotos as GP tested antibodies when first diagnosed.
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Jutokids
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No, you are not wrong and your dose of T4 should be increased if you still are symptomatic.
We generally feel at our best when our T4 is in, or heading towards the top quadrant of the range and currently your T4 is just around 40% through it's range.
T4 - Levothyroxine is inert and a storage hormone and needs to convert within the body into T3 which is the active hormone that runs the body.
Your T3 is coming in at around 40%, and this generally runs slightly behind that of T4 which will likely happen and even itself out as your T4 is increased.
As a rule of thumb, I know now, I feel at my best with a ferritin at around 100 : active B12 at around 75 + : folate at around 20 : and vitamin D at around 100 :
Having Hashimoto's does throw an additional spanner in the works and suggest you start reading up and many people find the research of Dr Izabella Wentz most useful.
Thankyou. GP just called again and asked for my private test results and is going to refer to an endo so I'm just hoping they are more clued up than the multiple GPs at my Surgery and will actually agree an increase. Just spent half the day in tears frustrated and then you start to doubt yourself.
Hi Jutokids, you have plenty of room for a dose increase, so I’d definitely push for that. If you still have adverse symptoms it’s definitely worth trialling an increased dose. Have you tried adopting a gluten free diet? This helps many of us with Hashimotos & is worth trying for a few months.
I haven't trialled that yet as have pushing for coeliac testing but that hasn't been done.I did do one of them finger prick blood tests at home for it and was negative but obv unsure how reliable that is. I definitely want to trial it to see if it helps.
She just made me feel so stupid. This is the 3rd GP I've spoken to since being diagnosed. The first one wanted to leave me on 50mcg. I'm so drained. She said she should hear back within a week so I'm just hoping the endo agrees and be another battle done for now. Even 125mcg and 100mcg alternate days I'll happily settle for lol. Just can't see why they think it's ok to leave me feeling like this and be so obsessed by the TSH number and nothing more.
I definitely had more energy when I stopped eating gluten, so definitely worth trying. It might be useful to use a pill cutter to split the 25mcg tablet and trial 112.5mcg per day.
I am pretty much a newbie here too and match your weight precisely (I call it the Bridget Jones weight). My first test for TSH was 10.8 with which I was offered Levothyroxine treatment. It had been higher 14.6 (one test three years before doctor put me on any treatment). Being stressed and with little time, my diet was poor with cereal for breakfast and toast for lunch. I stopped cereal and bread immediately and with Levothyroxine (75mg) felt much better, and importantly my hair stopped falling out. My doctor is pretty poor. My latest TSH tested over 5 and I am classed as in the normal range. Looking back, I had problems for over thirty years and doctors diagnosed 'women's' problems (IBS, endometriosis, etc...). I was given antibiotics for many years. One starts to feel like a hypochondriac; hence I did not see a doctor for over twenty-six years (they assumed I had moved abroad). Reading has opened my mind and I started looking at H Pylori (how it could cause leaky gut, IBS, Hashimoto's, etc...), Linus Pauling, Patrick Theut and diet generally (hubby also has FH). I was amazed how interconnected our bodies are. This site is amazing, there are so many knowledgeable people and such good reading about vitamins, food and their interactions. More importantly the support of affected members is a huge bonus. I asked for another test (booked for this week). I will start private tests. Sending a hug and best wishes.
I did test vitamins but can't find the exact figures but I've been on B12, B complex, D.
If this was a private test then just log into your account with whoever it was and you will find your results there. There should be a link to print them off as well.
Suggest you print out copies of all these guidelines on dose levothyroxine by weight
guidelines on dose levothyroxine by weight
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.
Doctors, even endos, as a general rule know next to nothing about thyroid. The idea that a pituitary hormone - TSH - can tell you if your thyroid hormones are optimal is obviously ludicrous to anyone with half a brain. For one thing, it assumes that the pituitary is working perfectly. But, why would you assume that? If the thyroid can go wonky, why not the pituitary, too? It can, and often does, work far from perfectly. You only have to read a few dozen full thyroid panels to see what a silly idea that is. However, that is what they're told in med school, and what they're told in med school is sacred, and they rarely, if ever, question it.
The most important number is the FT3. And, another thing that doctors fail to understand is that if you are hypo, it's not just a question of getting you back to euthyroid numbers again - which are different for everyone, anyway - but hypos more often than not need levels higher than euthyroid people to feel well. So, yes, you have plenty of room for an increase. And, I do hope you get it.
Just a word about gluten-free. It does sometimes help people feel better. Not that it has any effect on the Hashi's itself - it certainly won't cure it - but the point is that Hashi's people are often gluten-sensitive, so cutting out gluten relieves the symptoms caused by that gluten sensitivity. And, any relief is welcome, of course! It's a good thing to try, for three months or more, but if it doesn't help anything, try eating gluten again and see if things get worse. If they don't, then there's no point in staying gluten-free.
I'm a bit dubious that your GP is actually going to write to an Endo for advice, because I think an Endo would just be really dismissive about it. ie Likely to tell the GP that they should be able to deal with this, and not to waste their time.
I thought an endo was a bit extreme considering my T3 and T4 are under half way through range and seems to me plenty of room for an increase. Just checked my records online and it says - 14:04 - Choice and booking enhanced services administration
Referral to endocrinology service
--> Outgoing referral to
I'm annoyed but also maybe that's a good thing as I'm hoping any endo would look at my results and give an increase ?!
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