I’m very new to this: Hello just wanted to ask a... - Thyroid UK

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I’m very new to this

TurkeY787 profile image

Hello just wanted to ask a question been on my medication for six months now only on 50 mg levothroxine I just wanted to know if anyone else gets A lump underneath there eye but if you rub it it does disappear but it does come quite up puffy is that normal and is this because of the thyroid also get lots of achy pains in my legs as well they feel like I can’t move them and my mood swings are changing all the time but the doctor says my blood is fine thank u

26 Replies
SeasideSusie profile image
SeasideSusieAdministrator

TurkeY787

but the doctor says my blood is fine thank u

Never, never trust a doctor when they say your test result is fine. What they mean is that it falls within the range, but it's where within the range that matters. For example, if the range for FT4 is 12-22 and your result is 12 then your doctor will say it's fine. But you would be quite hypothyroid with that level.

Always get your results. If you are in the UK your surgery may offer online access to test results, so register for that if appropriate. If you don't have access to online results then ask the receptionist (never the doctor) for a print out of your results. It should contain the result plus the reference range. Then post results on the forum for members to give you a proper interpration of them.

Sorry, I can't comment on the lump under your eye, it's not something I've experienced.

Thank u

Ok
SeasideSusie profile image
SeasideSusieAdministrator in reply to TurkeY787

TurkeY787

OK, so it's good that you have online access and great that FT3 has been tested along with TSH and FT4, most labs wont do FT3 unless TSH is suppressed and many labs only do TSH.

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, if that is where you feel well.

How do you feel?

50mcg (microgram not mg-milligram :) ) is a starter dose. Your GP should be titrating your dose up to a level which gives you optimal results to relieve symptoms. TSH should be below 2.5 as an absolute maximum (and much lower if needed) when on thyroid hormone replacement:

From GP Notebook

gpnotebook.com/simplepage.c...

Target level for TSH during thyroxine therapy

Fine tuning of the dose could be necessary in some patients

* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary

From GP online

gponline.com/endocrinology-...

Under the section

Cardiovascular changes in hypothyroidism

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

So at 2.85 yourTSH is far too high. Your FT4 is 60.78% through range with FT3 at just 29.73% through range. FT4 and FT3 should be fairly well balanced and higher in range.

also get lots of achy pains in my legs as well they feel like I can’t move them and my mood swings are changing all the time

Mood changes are a symptom of hypothyroidism and can suggest undermedication. Check out any other signs and symptoms here:

thyroiduk.org/if-you-are-un...

It's likely that you need an increase in your Levo, 25mcg now and retest in 6-8 weeks, aiming for TSH to be much lower in range and hopefully that will raise your FT4 and ultimately raise your FT3.

Conversion of T4 to T3 relies on optimal nutrient levels and it would be a good idea to test

Vit D

B12

Folate

Ferritin

(ask GP, if he wont do them we have private labs which do)

Your achy pains in your legs might possibly be low Vit D.

Your other results are all in range and don't show anything untoward.

Thank you so much this is so new to me

Achy legs could be Vitamin D deficiency, but for me it’s part of being under medicated. Your TSH needs to come down. Your GP is not being helpful. I suggest you write down a list or print the symptoms list from the thyroid U.K. web site and tick all those that still apply to you. Then make another appointment and show him (if it’s phone, drop it into surgery a day or two before) and ask to increase your dose by 25 mcg a day to 75 mcg and tell him you want to be retested in 8 weeks.

Also ask for the vitamin and mineral tests SeasideSusie has listed. Push for these things. Don’t leave without them. We have to drag our prescribers kicking and fighting behind us with this condition or stay sick. When he says you are in range, say you appreciate that there is a range, but that for you, you do not yet feel optimal.

Good luck.

Thank u going to ring doctor again tomorrow this is help need to find out so much

You will find it here. Sadly you won’t get much from your GP. He’s already shown us his lack of thyroid knowledge. It’s hard, but this condition makes patient advocates out of most of us.

Yes I don’t think the GPs know enough about this it’s just so frustrating

shaws profile image
shawsAdministrator in reply to TurkeY787

Most GPs seem to believe that hypothyroidism is 'easy' to treat. It would be if they make the effort to help the patient as we need sufficient thyroid hormones (gradually increased) until our TSH is 1 or lower with Free T3 and Free T3 in the upper part of the ranges. Unfortunately few seem to be aware of this fact.

You should also request B12, Vit D, iron, ferritin and folate to be checked. All have to be optimal.

I assume you know that all blood tests should follow this method.

1. Make the earliest possible appointment - even if made weeks ahead.

2. It is a fasting test but you can drink water.

3. Don't take replacement hormones before test, but afterwards.

4. Always get a print-out of your results for your own records and post if you have any querieis.

TurkeY787 profile image
TurkeY787 in reply to shaws

Thank u so much

I know the achy heavy draggy leg feeling very well. For me it is definitely a hypo symptom. As I’m getting better on medication it’s now starting to reduce a lot and on some days it’s not there at all. Feel for you - it’s a horrible feeling! But also check your Vit D because I’ve read that low D can cause the same.

Thank you so much you’re also lovely on here c

shaws profile image
shawsAdministrator

On your 'personal page' you have not given any background of your journey to be finally diagnosed. It is helpful as, in future, members can read it without you having to repeat it often.

TurkeY787 profile image
TurkeY787 in reply to shaws

I’m new to this I didn’t know how to do it

shaws profile image
shawsAdministrator in reply to TurkeY787

Click on your name above and it will take you to your 'page' and just follow on to add a bit of information from "Hi! I’m TurkeY787".

SlowDragon profile image
SlowDragonAdministrator

Use these guidelines to get 25mcg dose increase in levothyroxine

How much do you weigh in kilo approx

(Likely to need further increase in coming months)

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

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

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.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

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.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

TurkeY787 profile image
TurkeY787 in reply to SlowDragon

Hi I weigh about nine stone The doctor has just increased it to an extra 25 makes it 75 now they said my levels are normal when I told them that they’re not normal they’re too high I really don’t think my doctor knows what they’re talking about she said to me yesterday on the phone I could have bipolar because I said my mood swings keep changing and I’m up-and-down I really don’t think my doctor knows anything about Thyroid i’m so up-and-down all the time I really don’t know what to do anymore

humanbean profile image
humanbean in reply to TurkeY787

I really don’t think my doctor knows anything about Thyroid

I totally agree. But treating the thyroid is considered to be so "easy" that doctors get only a couple of hours training on hypothyroidism and not much more. Their training can be summarised as "When TSH is above 10 prescribe Levothyroxine, raising dose until TSH is in range again."

They are much more interested in hyperthyroidism and its treatment (and still get that wrong a lot of the time).

she said to me yesterday on the phone I could have bipolar because I said my mood swings keep changing

This will almost certainly be caused by low thyroid hormone levels. It will also be caused by the low nutrient levels that most hypothyroid people end up with as an effect of the condition.

So I would say that your doctor fancies herself as a psychiatrist as well, but she's crap at that too. Don't accept prescriptions for anti-depressants or any other mood altering drug. You can fix the underlying causes of your mood changes by getting the right thyroid hormone treatment (which can be difficult), and optimising your nutrient levels.

Another thing that affects mood in people who are hypothyroid is being gluten-intolerant.

thyroidpharmacist.com/artic...

Many, many people who try avoiding gluten 100% feel much better very quickly. Being coeliac is not necessary to get benefits.

Edit : If you do decide to go gluten-free, don't do it at the same time as any other dietary changes. If it doesn't help then you can start eating gluten again. But if you've made half a dozen dietary changes how will you be able to work out what helped and what didn't?

TurkeY787 profile image
TurkeY787 in reply to humanbean

Yes I’ve been gluten-free for about a year and a half now that’s how all my symptoms started And now I have the thyroid issues now I just wish my doctors know what I was talking about when I’m talking to him they haven’t got a clue I was thinking to start eating weight again but should I not and stay gluten-free offence for all of your advice

humanbean profile image
humanbean in reply to TurkeY787

Sorry, but I can't decide whether you should or shouldn't eat gluten. It really is up to you to decide whether it has been any help or not. If it hasn't been obviously helpful then starting to eat gluten again might be worth trying. If it makes you worse after trying it again then stopping eating gluten permanently is your only choice.

You could try just eliminating wheat but continuing to eat barley and other gluten-containing grains. This works for some people - or so I've read.

TurkeY787 profile image
TurkeY787 in reply to humanbean

Thank u

TurkeY787 profile image
TurkeY787 in reply to TurkeY787

The reason I stopped eating wheat Barley and become gluten-free because I was feeling tired all the time I had pains in my legs I kept being sick all the time that’s why I stopped eating gluten But I’m thinking about giving it another go to see if I can tolerate it now because I do just think it was my thyroid I will give it a go

Hi TurkeY787❤️

You have been given some great advice from our members on here who have helped me so much, my thyroid went over active then got diagnosed with graves and lost my thyroid, like you I took my medication as instructed by my endo I was on thyroxine but my conversation was bad so I eventually got T3.. Its taken me around 8 months to get my meds right with no help from my gp all my help has come from this site, like you my gp kept saying your bloods are in range when in fact they were really awful.. I really felt very unwell with the so called normal range my gp was droning on about😠.. Personally I would love GPS to ditch this in range crap and just take a look at the patient, ask how we are feeling. I presented to my gp for over 12 months with nearly every symptom of hyperthyroidism but he kept telling me my TSH was in range.. A few weeks after sering him I saw another gp she diagnosed me there and then as hyperthyroid I got my blood results and my TSH was suppressed, so don't listen to Yr gp they really don't know anything about thyroid conditions, I hope you get sorted 👍👍🤞

Hello TurkeY787

Everyone on here has covered the meds and symptoms side of things. I want to emphasise to you how little most GPs know - And therefore how important it is to get genned up. I have read lots of information given to me on this site (a blessing) and lots of horror stories from other members.

I was diagnosed over a year ago - put on 25 µg of levothyroxine, which is the starter dose for a child or someone over 60 with heart problems, of which I am neither . Sadly because my doctor did not know how to interpret results, she just looked at the blood test lab sheet, saw that it said “normal”, sent me off saying all was good and I was left undermedicated for six months. Was very ill when I finally got a dose increase and have fought for each increase thereafter, bar the last one. I used my interpretation of my private and NHS results and references provided by this forum as well as symptoms and essentially explained them to whichever GP I have had to deal with. The last one put up no resistance to me getting 125 µg of levothyroxine daily.

I may yet need another increase considering the latest advice on giving 1.6 µg of Levothyroxine per kilogram of body weight, which in itself is an oversimplification, but at least acknowledges why my friend who is 4’11”and 6 1/2 stone and on 75 µg of levothyroxine will understandably do better than me who was hypo on the same dose at 5’8” and 15 stone! LOL!.

For the most part GPs seem (at least at my surgery) to simply read off the results as a receptionist would. They do not understand the range is a measure of the expected variability. There is also no mention on any lab results about what to do with outliers, which are data points, in our case human beings who do not fit their range, but are still real and still valid - You see outliers are not mistakes, more an indication of the limitations of the data model (range).

If you are “normal” in GP speak this merely means you are within range - it has no bearing on wellness, nor do many seem to care, obsessing more about “normal” than you actually being well.

How the patient actually feels seems to be fairly low down the pecking order, when compared to the seductive pull of “normal” and the cheapest meds they can palm us off with.

Being in range - “normal” and actually feeling well are a happy coincidence for many on this forum 😂

For the majority of GPs the range is a cup and we as patients are ping pong balls and if they get the ping ping ball in the cup - they win a prize.

Only my direct experiences (in the plural) over this last year or so has formed this what might appear a fairly jaundiced view. I await to NOT be disappointed………..

Strangely enough I have also noticed a whitish lump about the size of a 5p under my eye. I am also recently diagnosed and on 50mg

TurkeY787 profile image
TurkeY787 in reply to Tre55

Yes I get the lump underneath my right eye to i’ve just gone up to 75 mg but I’m still getting the lump underneath my eye

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