Hi all. So I’ve been here before asking advice and reading everyone’s experiences. After many months I finally got diagnosed with Hashimotos and hypothyroidism and put on 50mg levo. It took two months and then I started to improve, I actually felt loads better! I had energy again and I was happy, the depression lifted. I felt weirdly happy😂
That was about over a month ago and now I’m worried I’m having a dip. This last week I’ve been feeling a bit tired, nothing like I was before but I’m noticing it. I can’t work out if it’s normal tired or thyroid tired. I have had a few early mornings… also the high-like happiness has gone. I’m ok, not depressed, just normal I think.
So I thought I’d give it a couple of weeks and see how I go, but if I am getting worse again I feel stuck. My doctor told me she’d review me in a year but to come back in the meantime if I got worse. But not until after three months. She’s really strict on this, no more blood tests for three months and she won’t increase meds without a blood test. I’ve had this discussion before with her about treating symptoms but she seems resolute. So I’m worried I could deteriorate back to how I was at my worst while waiting. If I do feel I’m getting worse do you think I should ask for a referral to an Endo? Would that get me better results?
My last blood test was just for TSH (1.9) and T4 (17.4). Nothing else.
They have once tested me for vit D which was fine.
I don’t know how to deal with doctors really. I want a balance between asking for what I want and think I need, and not getting their back up, so they think I’m trouble or telling them their job.
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You are ready for a dose increase, as is usual a few weeks after starting Levo.
My doctor told me she’d review me in a year
No, no, no, no, no. Stupid doctor. She obviously doesn't know the protocol for initiating and titrating Levo in a Hypo patient. It doesn't matter what the cause, Hashi's or non-Hashi's, it's still hypothyroidism and treatment is the same.
The dose of levothyroxine (LT4) should be individualized on the basis of clinical response and thyroid function test (TFT) results. Treatment must be monitored regularly to determine an adequate dose and to avoid both under- and over-treatment.
Presumably she has started you on Levo according to the BNF recommendation, and this says to adjust dose every 3-4 weeks.:
The British National Formulary (BNF) recommends:
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.
Unfortunately in that link the NICE recommendation doesn't give a time frame for repeat testing but the section introduction does say that "treatment must be monitored regularly to determine an adequate dose" and of course the only way to do that is to retest to see if the dose needs adjusting. This would normally be done around 8 weeks but somewhere deep within the guidelines it does say 3 months:
1.4 Follow-up and monitoring of primary hypothyroidism
Tests for follow-up and monitoring of primary hypothyroidism
1.4.1 Aim 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.
1.4.2 Be 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.
Adults
***Take particular note of the following:***
1.4.3 For adults who are taking levothyroxine for primary hypothyroidism, consider measuring TSH every 3 months until the level has stabilised (2 similar measurements within the reference range 3 months apart), and then once a year.
1.4.4 Consider measuring FT4 as well as TSH for adults who continue to have symptoms of hypothyroidism after starting levothyroxine.
So your GP should be retesting every 3 months until your results show that you have stabilised and that your symptoms have been relieved.
I think a copy of the guidelines might make a nice Christmas gift for your GP 😁
PS - we need reference ranges for your test results, these vary from lab to lab. The aim of a treated 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. Your TSH is still to high and we can't interpret your FT4 result without the range.
they do have (financial) limits imposed on how often and under what circumstances they are allowed to reorder thyroid bloods..... hence the "no new test for 3 months after a normal TSH result"
But that 'rule' doesn't override the patients needs when they are trying to find the right dose for you following a diagnosis..
That 'rule' it is mainly there to stop patients without a thyroid diagnosis and a with a 'normal' TSH result repeatedly asking for it to be rechecked every month.
And certainly shouldn't be used to limit testing when the patient is initially started on Levo, and the intention is to titrate the dose up until the patient feels well .
After diagnosis it is quite usual for us to feel a temporary improvement on the starter dose of 50mcg , that then 'wears off ' after a month or so .. usually meaning a dose increase is needed.
They DO have to wait at least 6 weeks after starting any new dose before doing thyroid bloods ... this part is not for financial limitations .. it's for medical reasons because it takes at least that long for TSH to move and settle down in response to the new dose.
How long have you been on 50mcg now ?
How long had you been on 50mcg when that last blood test was done ?
I started on 50mg levo the last week of July after these blood results:
Serum free T4 level 16.4 pmol/L [10.0 - 20.0]
Serum TSH level 8.4 miu/L [0.2 - 4.0]
Plus all the symptoms I had obviously.
Then I got a bit worse, then I got loads better. Next blood test was end of October, so 12 weeks of taking the meds.
Serum TSH level 1.9 miu/L [0.2 - 4.0]
Serum free T4 level 17.5 pmol/L [10.0 - 20.0]
Because I was feeling better and the TSH had reduced, my dosage was left the same and that was it, I was left to get on with things.
When I first started levo and got worse, I went back to docs after six weeks (after reading on here actually) and she sent me away saying give it time, wouldn’t do anything until after three months.
So she’s not the most receptive it seems. I know she won’t blood test me if I go back before three months.
Ok so your last bloods were very recent, so no ,she won't really be able to ask for them again ... BUT the point is .... they are SO recent that SHE DOESN'T NEED to do them again before allowing a dose increase .
Go back to GP say you have had a significant worsening of hypothyroid symptoms since you last spoke.
Request a dose increase to 75mcg to see if it will resolve them.
Because your recent TSH was 1.9 (comfortably above the bottom limit) and your fT4 was 17 (comfortably below the top limit) on 50mcg .. this shows her that there is definitely enough room in your blood results for a dose increase.
So she doesn't need to do anther blood test .. she already knows your results on 50mcg .
and those results said there was room for an increase in dose IF NEEDED .... ie .. if you'd said you still felt crap on those results then she could / should have increased dose last time you spoke.
There is absolutely nothing stopping her looking at THOSE results and increasing dose now , since you've obviously started to fell worse again ... which is extremely common when only on 50mcg .. it happens to most people .. they then need increasing until they feel well and stay feeling well .
IF the fT4 then goes over range, or if the TSH then goes under range, then it does becomes more challenging to get them to agree to increase dose any further .. but you're not there yet .. not by a long way.
your levo dose could be increased quite a lot before your TSH went under range or your fT4 went over .. everyone has a different response ... and the only way to find out is to increase it and see what happens to the patients bloods and how they feel.
So ignore the "you can't have another blood test yet" .. it's a red herring.
Just say you would like 'try' a dose increase to 75mcg because your blood test on 50mcg show there is room to do so , and your symptoms suggest an increase in dose is needed.
“and those results said there was room for an increase in dose IF NEEDED .... ie .. if you'd said you still felt crap on those results then she could / should have increased dose last time you spoke.”
That’s true. At that point if I was no better she’d have increased dose. But I was doing really well so all was good.
She was concerned about tipping me over to hyper with any increase.
She was concerned about tipping me over to hyper with any increase. pardon my language , but that's just cobblers .
( and being pedantic it's also the wrong word .. she means 'overmedicated ' ... 'hyperthyroid' is a totally different medical condition.. and is not relevant to hypothyroid patients on Levothyoxine)
IF you were on an already higher than expected dose (1.6mcg /Kg) .. THEN it might be a reasonable concern..... but you're not .. you're only on 50 ..... most patients end up on something more like 100-125 .. a few do OK on 75mcg.. a few need 150mcg or more. . (in practice the dose needed often bears no relation to their weight )
IF your TSH was very close to the bottom of the range THEN it might be a reasonable concern... but you're not .. you're still higher than the most common level for healthy people which is around 1.. see this graph healthunlocked.com/thyroidu...
IF your fT4 was VERY near the top of the range THEN it might be a reasonable concern .. but yours isn't ... on a range of [10-20 ] there is no reason why you can't have 18 , or 19 or 19 .9 or even 20.
...... and bear in mind your fT4 at diagnosis was 16.4 and 50mcg Levo has only increased it by 1 pmol to 17.5 ... so (politely ) ask her why she thinks another 25mcg would increase it by 2.5 pmol and take it over range. .. she'll be stumped .. cos they have NO WAY of knowing how much your result will be changed after an increase ..
the only way they will know is to try .. and with your current results on 50mcg they have NO REASON NOT TO TRY.
just smile and say .." that's interesting .. however i'd still like to try another25mcg and then see what effect it has on my symptoms and blood results"
b) "obviously i don't wish to be overmedicated, and if i were to feel any symptoms of overmedication i will let you know.... i know to look out for a fine tremor in the fingers/ feeling anxious & irritable / having over frequent bowel movement's / loosing weight unexpectedly "
c) Remember to massage GP's ego on way out .
d)... job done.
e) And don't beat yourself up if you fail to keep as cool as cucumber ... it's easy to write it . but i usually find it impossible and often end up coming away upset with myself , worrying that i've just made myself look really bad/unstable /passive aggressive /whatever .. but i do usually get what i needed them to do .. regardless of what they may think ... and they'll be too busy with the next patient to have time to think much anyway .
Bloods should be retested every 2-3 months until you results are stable and symptoms resolved
Levothyroxine doesn’t top up failing thyroid, it replaces it….so nearly everyone on levothyroxine will eventually be on full replacement dose levothyroxine
50mcg is only a starter dose
Dose is increased slowly upwards in 25mcg steps, retesting 6-8 weeks after each dose change or brand change in levothyroxine
Typically dose levothyroxine is eventually going to be around 1.6mcg levothyroxine per kilo of your weight. Some people need higher dose, a few might need lower dose
Approx how much do you weigh in kilo
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
Essential to test vitamin D, folate, ferritin and B12 as well
What vitamin supplements are you currently taking
When were vitamin levels last tested
As you have Hashimoto’s……Have you had coeliac blood test done yet
SlowDragon replied to say that you needed your Vit D result because you should aim for "at least around 80nmol and around 100nmol maybe better". Actually the recommended level, according to the Vit D Society and Grassroots Health, is actually 100-150nmol/L with a recent blog post on Grassroots Health recommending at least 125nmol/L.
She also mentioned that you needed the range for folate as we need it to be at least half way through range, and that B12 should be a minimum of 500pg/ml (or ng/L). Also that we need the range for folate.
So your nutrient levels weren't OK, they were questioned and you didn't come back with the ranges or the Vit D result. It's very likely they're far from optimal.
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
GP wont test those again because they're all within range so they are satisfied.
Serum ferritin level 146 ug/L [10.0 - 322.0]
This appears to be fine. However, as ferritin can be raised due to inflammation, it's always good to see a CRP test done at the same time as ferritin. CRP is an inflammation marker and if this is high then ferritin is probably higher than normal too.
Serum folate level 12.0 ug/L [5.4 - 24.0]
Half way through range is 15, so between 15 and 24 is the aim for this level with this range. I agree with SlowDragon that a good quality B Complex will help, my choice is Thorne Basic B.
B12 - what was the unit of measurement for this test?
Serum total 25-hydroxy vitamin D level 63 nmol/L [50.0 - 100.0]
If you want to follow the advice of the Vit D Society and Grassroots Health (rather than the NHS whose aim generally seems to be lower for everything), then you're looking at reaching a level between 125 and 150nmol/L. To achieve that level you're looking at supplementing with 3,500-4,000iu D3 daily. Retest in March to check your level.
Once you've reached the recommended level then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.
D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc. 90-100mcg K2-MK7 is enough for up to 10,000iu D3.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.
For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.
Magnesium helps D3 to work. We need magnesium so that the body utilises D3, it's required to convert Vit D into it's active form, and large doses of D3 can induce depletion of magnesium. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, or Aristo (100mcg only) are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
The same thing happened to me, I was put on 50mcg, saw some very modest improvements but nothing to write home about, this was during summer 2020 so things were a bit delayed in my case regarding repeat bloods due to covid.
When I did get them repeated I was expecting an increase to 75mcg as I'd been led to expect but no, my GP saw my TSH was in range, around 4 or just a bit below if memory serves and that was that. Nothing to see here move along. I don't even know if they tested FT4.
It wasn't until the second lot of bloods a couple of months later that they saw my TSH was going up again and my FT4 was really low that I got an increase to 75mcg. I've had 2 more increases since then as my TSH is stubbornly high, now on 125mcg.
But my GP really did seem to think job done on 50mcg and was quite happy to leave me on it indefinitely. I was surprised at her as she was an old school GP, since retired. Who was normally excellent in every other way.
😬 glad you’ve been getting the increases since then. Doctors can be funny- that’s why I’m not sure how to approach it. I could make an appointment with a different doc at the surgery but it might be obvious what I’m doing, and I’m sure they all talk and there’ll be stuff written on notes.
I always take the view that doctors are medical experts,allegedly, but only you are an expert on your own body, life and how you feel.
No one knows what it's to be you, no one else knows how much pain, fatigue, discomfort you've experienced. No one can walk in your shoes. You are far more than just an in range test result.
Hi I know what you mean, you want to be assertive and be your best advocate because no one else will, but you don't want to be labelled as difficult or a "Karen". It is tough but I guess if you could print off the guidelines that Susie kindly contributed. They are the NHS own guidelines. And take them with you or read them out/email them?
I've certainly found some GP's are far more receptive to bending the rules a little, others are strictly by the book. The other option could be a consult with a private GP who could prescribe on the NHS. Not one at your own surgery, if you feel awkward. I don't know if that's an option.
to be honest.. i don't think there's any way to avoid being seen as 'difficult' once you start questioning their decisions about 'thyroid hormone replacement' ..
.... so you may as well just accept the "difficult" label it ,and deal with the situation as professionally you can mange .
Turn it from "difficult " into "knowledgable, confident and clear in her requests, so don't anybody try and fob her off"
Know your facts . be polite and not confrontational , but don't be fobbed off .... just repeat your reasonable request calmly. and keep repeating it without loosing your temper.
Try not to think of it as 'questioning their decisions ' ... but instead that 'you are just as worthy of being treated with respect as they are .. and you are an equal partner in your health care decisions .. and you expect to be dealt with as such'.
It's inevitable that they won't like it much .. it's an ego thing .. most will see it as questioning their "authority."..... but hold on to the belief that they need to treat you with respect, as well as the other way round, .... it helps you both come to "a working understanding" of each other sooner.
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