I'll keep this short, I was recently diagnosed with subclinical hypothyroidism with TSH of just over 5 but years of horrible symptoms. I was started on a low dose of 25mcg per day, increased after six weeks to 37.5mcg,
I realise that this is a fairly low dose, and that based on my weight I should be shooting for somewhere in the region of 125mcg in the long-term. I realise that it is either ill-advised or simply not possible to go from a modest dosage like mine to that kind of level in one fell swoop, however I can't deny (rightly or wrongly) a degree if impatience to get on the 'right' dosage and been feeling some relief from my symptoms. I fear for my ability to keep doing my job (I am the sole provider), my sanity and just my basic ability to keep my **** together if I keep feeling like this for much longer.
I have a follow-up assessment soon, and I know that so far treatment has only seen T4 and T3 decline modestly from where I started. Would it be reasonable to request an increase to 75mcg (which would effectively be double my current dosage) or is there a strict cap on 25mcg increments?
Apologies if this sounds desperate - that's just how I'd summarise my emotions right now. I just want to be the husband and father my wife and kids deserve and I'm physically and emotionally struggling to be that man right now and I'm deeply concerned that there will be serious ramifications somewhere along the path ahead if I can't get some respite from this.
Thanks. x
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JonnyA
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25mcg as a starter dose is usually for a child, the elderly or those with a heart condition. You could have been started on 50mcg and your increase could have been to 50mcg rather than 37.5mcg. But it wasn't and you can't double your dose.
Sorry but you need to be patient and gradually increase your dose over time with 25mcg increments with 6-8 weeks between each increase and as you get nearer to your optimal dose maybe a 12.5mcg increase so as to not overshoot your sweet spot.
I have found that even if I leave 8 weeks after a dose increase before testing and even though it shows the results I expect to see I can still feel further benefit at 10 weeks, so we must leave enough time for the hormone to do it's work and levels to settle. Rush it and it will come back and bite you on the bum!
Sorry that it's not what you want to hear, but take your time to get it right now rather than overshoot then take even longer to put it right.
Just physically worse -- hard to explain, but I am having such trouble increasing my dose. When I do increase it, my morning "panic" feelings, tinnitus, full ears, vision probs are getting worse after about 10 days of a tiny increase. I'm so utterly confused as to what to do anymore...
OK. So in that case, as I have no experience of NDT (other than trying it 20 years ago and it didn't do the job for me). As it contains both T4 and T3, maybe you can't tolerate the extra T3 albeit it would only be a small amount. I'm afraid I just don't know.
On the whole I agree with Seaside Susie. I remember well the frustration. I too was the sole provider and felt my my job could be on the line. The problem is your doctors have started you on a super low dose and effectively you havent even got to an adult starter dose......this has delayed improvements. What are your current blood test results? Although it should always be increased in 25mcg increments, depending on your blood test results there could be an argument to increase to 75mcg but after that increase in 25mcg dose incrementally every 6-8 weeks subject to blood test results. Ensure too that your b12, vit D, iron levels and folate are optimal as they are commonly low.
If you are allowed to increase to 75mcg then you are looking at a further 12-14 weeks to reach what you feel is your optimal dose.....though this will all depend on how you respond as you may need more or less so dont be too fixed on weight -it is a guide. This slow introduction is necessary to slowly wake up your metabolism......go faster and you are likely to over whelm your body and generate symtpoms of being over cooked. Meaning you have to stop meds and start again....slowing the process even further. The tortoise always wins the race......sorry to say this. You have all my sympathy.
Make sure you get vitamins and testosterone tested at next test too
ALWAYS Test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
that's useful . i hadn't seen that page before " Your doctor will tell you how many tablets to take each day.
The dose of levothyroxine varies from person to person.
Although starting doses are usually the same, the dose of levothyroxine you end up taking, or how quickly the dose is increased, depends on your symptoms, hormone levels, age and whether you have any other health problems.
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
The NHS website frequently doesn't reflect what the NICE Clinical Knowledge Summary says.
I have never seen anything about a starting dose of 75mcg.
Current guidelines state:
* 25mcg - 50mcg for those 65 years and over, and adults with a history of cardiovascular disease.
* Dose by weight, ie 1.6mcg per kg of weight for under 65s also suggested as a starting dose.
They also include suggestions by the BNF:
* For adults aged 18–49 years — initially 50–100 micrograms once daily; adjusted in steps of 25–50 micrograms every 3–4 weeks, adjusted according to response; maintenance 100–200 micrograms once daily.
* For adults aged 50 years and over, with cardiovascular disease, or severe hypothyroidism — initially 25 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily.
Also, (to let them off the hook even further if GP's don't wish to give adequate dose for people diagnosed with 'sub clinical hypo' ), the bit you quote above is actually from the "Managing Primary Hypothyroidism" section 1.3 of the NICE guidelines.
The part below that for "Managing Subclinical Hypothyroidism" (section 1.5 )is much more vague about starting dose/increase rate, and just say's this
" Treating subclinical hypothyroidism
Adults
1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
~ ( Section 1.4 Tests for follow-up and monitoring of primary hypothyroidism
1.4.1Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.
1.4.2Be aware that the TSH level can take up to 6 months to return to the reference range for people who had a very high TSH level before starting treatment with levothyroxine or a prolonged period of untreated hypothyroidism. Take this into account when adjusting the dose of levothyroxine.) ~
1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
symptoms of hypothyroidism.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment. "
So if they insisted on being really pedantic about it ,, the sub clinical guidelines just say " get TSH into range , but don't supress it . if symptoms remain when TSH in range , consider stopping it." they unfortunately don't specify anything about size of starting dose or dose by weight for 'subclinical'.
Ah yes, I did only look at the primary hypothyroidism part but it wasn't in answer to the OP, it was questioning where ClareP5 found the information about a starter dose of 75mcg, which sounds like a primary hypo starter dose rather than subclinical.
Such a pity they can't get their act together really, the information is so contradictory and confusing.
, yes i thought you had... i've just noticed on the bottom of that page that ClareP5 linked to ( nhs.uk/medicines/levothyrox... ) .. there is a direct link to Health Unlocked " Levothyroxine Forum" (?) which is a page of HU search result's including the term 'levothyroxine' . The page is headed b a long article on the joys of Levothyroxine,, and amongst other bit's of NHS Levo only propaganda, it answers interesting questions like . "can i still ride my bicycle on Levo ?" ... Mmmm
But still , it turns out the NHS does directly send people directly to this forum for advice ... so those GP's who tell us we shouldn't be looking to this forum for advice are contradicting the NHS advice that it is a 'useful resource'
Oh look.... how nice to see that shiny new page is so up to date with all the most cutting edge information "The thyroid gland
The thyroid gland is a small butterfly-shaped gland in the neck, just in front of the windpipe ..."
Has anybody counted how many different/contradictory pages they have up at the same time about hypo ? ........ not for the first time, the word's 'piss up' and 'brewery' come to mind.
Because you were subclinical, you have been given small amounts of thyroxine to top thyroid levels up. As previously explained this doesn’t always work because can alter the thyroid physiology until levels eventually balance out with TSH. Being the sole provider must be a huge strain for you and stress is heavily implicated in influencing good thyroid functioning.
There is no cap on dose raises. They are determined by the amount of thyroid hormone required, and doses may be doubled if they are small and the thyroid hormone deficit still high (say 25mcg, doubled to 50mcg totaling 75mcg). Your raise was extremely modest but maybe matched levels at that time.
I was initially started on 100mcg Levo many years ago which perhaps wasn’t a great move as gave me further problems as a direct consequence of increasing a slowed metabolism too quickly. I explained common problems in your previous post.
Now with FT4 60% & FT3 46% through range you are due a dose raise and said you are seeing your endo in September. Given your symptoms, if this was me I would be asking for the dose to be doubled up to 75mcg.
Meanwhile, remember it isn’t just about the numbers and to encourage those you already have to start working more effectively have you had iron, nutrients and thyroid antibody levels checked?
I unilaterally raised the amount I was taking every 4-5 weeks based on private tests then when I did get to see the Endo I’d admit to what I’d done but by then he’d see my results on the higher dose so it was a done deal. Even doing this I’ve taken three years to get to a decent level of T3 and symptoms abated. I was subclinical too. But if you’re seeing the doc in sept just ensure you get a decent increase this time. I’d push for 75. And if they insist on less go with it for a month then increase yourself! Just an opinion - very much not a doctor!
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."
There is a balance to be struck between going too slow and going too quickly to a dose that may be too high.
GP explained to me at diagnosis that my dose would have to be gradually increased over time as more of my thyroid was damaged (i had high TPOab. so autoimmune hypothyroid)
When i was started (had TSH of 6.8 at diagnosis and TT4 91 [65 -155], so 'subclinical') .... i was put on 50mcg for 7 weeks .. had blood test , TSH 2.9 TT4 112 [65 -155] GP said come back for blood test in 6 months.
Immediately afterwards i increased dose myself to 100mcg.(can't remember how come i had enough tablets, must have just put in for repeat, but it was 2004 . might be more tricky now) .... went for blood test 5 months later TSH 2.5 TT4 127 [65 -155] told GP i'd been taking 100mcg because i'd started to feel to slow /cold again on 50mcg ,and because my bloods were still in range he couldn't say any reason why i should not continue so he increased prescription to 100mcg. He said come back for blood in 3 months.
Immediately afterwards i increased to 150mcg,
Blood test 3 months later. TSH 2.7 TT4 129 [65 -155] told GP i'd been taking 150mcg for same reason as before , since blood tests were still in range he again had no reason why i shouldn't continue , so he increased prescription to 150mcg.
If i was doing it again, (now i know more about my own body, my own bloods, and how thyroid hormones work) i would have gone more cautiously after i got to 100mcg .. but i wouldn't have wanted to take any longer than that to get to 100mcg... it just seems pointless to drag it out for longer .
But i was in my 30's and otherwise fit, no heart issues, no other conditions. So i am not advising you to follow my example without first getting a clear understanding from your GP as to why they started you so slowly.
After about 7 months on 150mcg , i tried an increased (to 175 ? i think) but it didn't improve how i felt .. unlike the previous times. Had a blood test , and TSH was 0.001 and Free T4 was 36.7 [13 -26] .. GP sent me a sharp letter saying "do not take more than 150mcg"
So i'd advise you find a route somewhere in between your GP's really slow progress and my rather heavy handed attempts at dose increases. I did 'over-shoot' , and my TSH never really came back up from the 0.05ish level... ideally it is better if TSH can be closer to 1 than 0 because TSH drives T4 to T3 conversion if TSH is too low you get less T3 out of the T4 that you take .. and T3 is what makes your cells work.
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