Could someone please advise on my results - Thyroid UK

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Could someone please advise on my results

Katrina999666
Katrina999666

Started on Levothyroxine 25mcgs 9 weeks ago after GP results

TSH 4.21 (0.27-4.2)

T4 13.5 (10-22)

No T3 done by GP

Antibodies 168.71

Repeat bloods taken two days ago by GP results

TSH 4.21 (0.27-4.2) so no change despite being on the Levothyroxine

T4 15.9 (10-22)

T3 not done by GP

GP says not keen to increase the Levothyroxine as my T4 result was better

She says if levothyroxine was increased it could result in my becoming Hyperthyroid.

Can anyone shed some light on why she would think this? I'm new to trying to get my head around the results but I am thinking that because my TSH has remained the same despite the commencement of the Levothyroxine that it's only replacing what my body was making before hand and that an increase would be were we should be looking to go. I actually feel worse since starting the Levothyroxine. I have enough that I could actually up the dose myself but would I up it by 12.5 or 25mgs . I'm taking Vitamin D and K after private blood results Medicheck showed that was the only thing that was out of sync

56 Replies
oldestnewest

You are correct - the levo is replacing what your thyroid was struggling to make. you do need an increase. when on levo your TSH should be 1 or lower. You cannot become hyper..you can become overmedicated. However Your FT4 is 15.9 and the top of the range is 22 so you have a bit to go yet.

Unless you are old or have a health problem the recommended starting dose is 50mcg per day.

Thank you for taking the time to reply Lalatoot that was my thinking too. I have no other medical problems that would contradict an increase and I'm only 59.

Kandahar
Kandahar in reply to Lalatoot

Sorry to introduce a bit of levity here, but what is your definition of ’old’? And before you reply, I’m 75!

Lalatoot
Lalatoot in reply to Kandahar

I'm 64. The medical guidelines state 65. So I'm nearly there!!

SlowDragon
SlowDragonAdministrator

Taking a tiny dose levothyroxine of levothyroxine doesn’t top up a failing thyroid ...it replaces it ....and with too little to make any difference

So it’s important to take high enough dose

Standard starter dose of levothyroxine is 50mcg (unless over 60yeaes old)

Dose should be increased up....most people eventually need to be on full replacement dose

Guidelines now advise GP’s to start on even higher dose....

guidelines on dose levothyroxine by weight

Even if we 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 on 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.

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.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Push for next 25mcg dose increase in levothyroxine up to STARTER dose

Essential to test vitamin D, folate, ferritin and B12 regularly....low vitamins are EXTREMELY common with autoimmune thyroid disease

Thanks for the quick reply SlowDragon that was my thinking although I am far from knowing that much as I am at the start of this journey. When I suggested that I felt I should be increasing she said I could try an small increase but her fear was that I could end up Hyperthyroid and I couldn't get my head around why she would think that when my TSH was the same as 9 weeks previously and there was a very small change in the T4. I think I will increase it by 25mcgs and be vigilant of any issues with the increase. I did say to her that as far as I was concerned the Levothyroxine 25 dose was only replacing not topping up.

If you are hypothyroid you can't become hyperthyroid (unless as a result of Graves disease concurrent with hypothyroidism). You can become overmedicated but you would need to check FT3 to confirm that. So in future if GP says you're overmedicated then insist on FT3 test alongside the others to evidence it before dose reduction.

thanks for replying apparently in our health board they don't perform T3 testing I had it carried out privately through medichecks and she won't acknowledge their results. Shes reluctant to increase the dose from 25 to 50mcgs says I should wait a further 8 weeks and be retested so in all that would have been 16 weeks I would have been on the low dose of 25 :0(

If you can then try increasing so you are taking 50 mcgs.

Even if your doc says lab won't test which is no doubt true you can still stick to your guns and refuse to reduce dose without FT3 testing. The doctor can write it in your notes to cover themselves. It's sort of a stalemate situation but can help achieve your purpose.

It's possible that when your vitamin D increases to a good level it might change your thyroid levels so just monitor it and adjust if needed. As your TSH is borderline for hypothyroidism and you have elevated TPO antibodies you might experience fluctuation that takes you in and out of normal thyroid levels. You'll have to see how you feel once vitamin D is at optimal level I think.

Thanks I think it's a cost issue that's why in our Health Board they need to justify the T3 testing. I will ask her to note it in my medical records. I'm going to retest Vitamin levels etc with Medichecks next week then after the blood draw I'm going to increase the dose by 25 to 50mcgs and see how I feel.

Your tsh is too low you need t3 cytomel and t4 . I have hashimotos and felt more tired on just t4 levo

I thought the aim was to have a lower TSH? although I might be wrong as just starting out on this journey

It's an NHS policy issue, the test doesn't cost much. It's ridiculous but there we are... I've also responded to your query about effectiveness of levothyroxine.

TSH110
TSH110 in reply to Katrina999666

She’s useless, as if you would become over medicated on a measily 25mcg increase when the TSH is over 4! Poor you with a fool like that as your GP. Can you see anyone else or get the list from Thyroid UK admin for sympathetic medics if you can afford to pay. She’ll cause you a terrible price with your health with that level of ignorance.

Katrina999666
Katrina999666 in reply to TSH110

no village doctor so my only option is to source private

TSH110
TSH110 in reply to Katrina999666

It will be worth it....

If you have Hashimotos (autoimmune hypothyroidism) the meds won’t work as it’s your immune system that’s the root cause. I’ve read books on how to get into remission and it includes no gluten, no dairy plus some liver and gut protocols which has helped - not on meds.

jjjam
jjjam in reply to Kathleen28

Would you be able to give details of the books/authors that helped please? Thank you!

Kathleen28
Kathleen28 in reply to jjjam

Hashimoto's Protocol: A 90-Day Plan for Reversing Thyroid Symptoms and Getting Your Life Back amazon.co.uk/dp/006257129X/...

jjjam
jjjam in reply to Kathleen28

That's great, thank you, I'll take a look.

Kathleen28
Kathleen28 in reply to jjjam

Good luck :)

That's very interesting Kathleen I will look those books up I didn't realise that if it's Hashimotos the medication isn't any good

I think medication helps with some people...T3 especially if you have conversion problems (T4 - T3) but it’s a bandaid approach versus root cause treatment. Liver function is imperative as 80% of this conversion happens in the liver, thus the gut and liver care as well x

T3 is the active form needed by the body and I think Levo is T4 relying on a healthy liver to convert plus zinc/ selenium as cofactors to facilitate the process. T4 is released by thyroid gland in larger amounts than T3 and is converted to T3

Thank you Kathleen I did have some issues with my LFT's some years ago so I have asked for a copy of all of my blood results as well as records that mention anything to do with my Liver. They thought at the time that it was something to do with the sjogrens diagnosis I had but the LFT's returned to normal limits over a short time.

Hi Katrina

Watched this interesting video this morning; an interesting perspective on overall health through lifestyle/diet. Thought I’d share x

youtu.be/_VZrY2vSbws

Titled ‘How a doctor cured her autoimmune with functional medicine’ Cynthia Li talking to Dr Mark Hyman

Thank you Kathleen x

SlowDragon
SlowDragonAdministrator

Your GP needs to read up on Thyroid treatment

I suggest you print all those links out,

Highlight relevant sections re dose by weight and drop copies to her with covering letter

She’s going to keep you (and other thyroid patients) very unwell

Is there different GP you can see

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

You may need to see an endocrinologist to get adequately treated...usually privately as GP reluctant to refer and waiting lists are months/year on nhs

The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of where TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

Thanks I will do that she is such an arrogant person I will email Dionne to ask for local endocrinologists in my area I don't mind going privately if I get to feel better sooner. My T3 was 3.97 (3.1-6.8) when last checked with Medichecks but I am going to repeat next week so I will see what has changed if anything with that since starting the Levothyroxine . As it stands presently I am not half way through the T3 nor am I in the top third of the FT4 going on previous results. Kathleen commented above that if it is due to Hashimotos the Levothyroxine medication won't help but I can't find anywhere searching that states this?

If you become hypothyroid as a result of Hashimotos then as the disease progresses you will usually become slowly more hypothyroid as the autoimmune system continues to attacks the Thyroid gland and it gradually fails.

Changes such as diet, looking after gut function and maintaining good vitamin levels all help your body cope with autoimmune disease. But, humanly speaking are unlike to ultimately cure the autoimmune factor - at least, I haven't read or heard about any thing that does even though it may slow progress. The disease procesd fluctuates so it may appear you've recovered for a while or for a long time. Other factors may reduce thyroid function temporarily too so it can appear that the Thyroid began to fail and then recovered.

Ultimately you are very likely to need levothyroxine long term if active autoimmune disease begins to attack the Thyroid gland. I've read that some people have elevated TPO antibodies but never develop thyroid disease irregardless of what they do in terms of diet etc.

Levothyroxine is effective at restoring lost thyroid function. Some people who have lost a lot of thyroid function or have a genetic variant may need another type of thyroid hormone but that's unlikely to be necessary for you since you still have a lot of thyroid function remaining.

Thank you very informative I have Sjogrens syndrome so I've read Autoimmune conditions like to have company lol ... so I'm presuming it will continue to destroy my thyroid. I've had no outer eyebrows for years the last time I shaved my legs was years ago and under my arms. My ferratin was high and the Vitamin D was insufficient so I've started supplementing that taking the oral spray that contains the Vit K too. I'm going to do a full all singing all dancing well woman blood draw test with Medichecks on Monday to see how things have or haven't improved over the last 9 weeks. And on Monday I'm going to increase the Levothyroxine by 25 to 50mcgs and see how I feel this forum and it's members are a great help I;m very grateful for everyone that has replied x

Did GP do a full iron panel? I believe that ferritin can be high due to inflammation. That doesn't rule out iron deficiency though but I don't know much about iron levels. I just think it's something to ask doctor about and make sure you still get iron deficiency ruled out.

I'm sorry you've got Sjogrens too and I don't know how sjogrens affects thyroid levels but if you have inflammation perhaps it could raise TSH levels? So your doctor is probably being cautious because they're probably unsure too. Maybe someone on this forum has experience in this area nd could offer some clarity on it? Sometimes balancing thyroid hormone level is not straightforward when there are other factors influencing how the Thyroid functions. In this instance I would think that testing FT3 as well as FT4 and TSH is even more important.

The well woman blood draw with medi checks will check Iron deficiency so that will be helpful in establishing if there is anything going on there. I did read that high levels of Ferritin could indicate inflammation tying in with the Hashimotos. I'm keen to see whether the FT3 has increased when the medichecks blood draw is done next week.

SlowDragon
SlowDragonAdministrator in reply to Katrina999666

It’s not that the levothyroxine won’t help...

It will...BUT with Hashimoto’s we frequently have very low vitamin levels due to poor gut function

...vitamins need regularly retesting and self supplementing to improve to OPTIMAL levels...that frequently means supplementing virtually continuously

Gluten free diet often essential...dairy free frequently too

Maintaining optimal vitamin levels helps improve poor conversion rate of Ft4 to Ft3

You won’t know how good (or bad) your conversion is until on a decent level of levothyroxine.....typically 1.6mcg levothyroxine per kilo of your weight

Can be that some people can’t tolerate high enough dose Levothyroxine....or even if can tolerate recommended dose ...Ft3 remains low

Only then will you know if you need the addition of small doses of T3 alongside levothyroxine....On any dose of T3...TSH will become completely suppressed....which freaks the average GP right out

T3 only prescribed with extreme difficulty via very few NHS endocrinologists ....But you are nowhere near considering T3 ...yet ...and only about 20% of Hashimoto’s patients find they need T3

But everyone needs high enough dose of Levothyroxine

So First step is to get levothyroxine dose increased slowly upwards until on full replacement dose

If GP continues to completely ignore national NICE guidelines....you will need to see an endocrinologist who will write to GP and instruct them to offer correct treatment .

Thanks I haven't even looked at T3 medication information. Hopefully taking the Vit D and K will have helped boost my levels and having the Iron panel done will rule out anything going on there. So much information to read and to digest. Because she said I was subclinical she wasn't keen to offer medication and quoted Nice guidelines telling me that the TSH should be greater than 10 but when she tested Antibodies and they were positive she then said it might be an idea to commence on a small dose of medication.

SlowDragon
SlowDragonAdministrator in reply to Katrina999666

This link explains difference between clinical and sub clinical ....

See second flow chart

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

Sub clinical with raised antibodies confirms autoimmune thyroid disease

TSH with autoimmune thyroid disease is very unreliable because levels hop up and down so much.

Treatment with levothyroxine still needs to be at high enough dose ....as clearly stated on those guidelines

Thank you these links are appreciated

When I click on the link it doesn't take me to a specific article only to the page and it looks like I have to register ?

SlowDragon
SlowDragonAdministrator in reply to Katrina999666

Try it again

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

Ignore me I have managed to access it now it has downloaded to my laptop thank you for your patience

SlowDragon
SlowDragonAdministrator in reply to Katrina999666

So many GP’s don’t seem to understand Levothyroxine doesn’t “top up” a failing thyroid...it replaces it ....hence the reason dose by weight

Only taking a tiny dose of levothyroxine, will reduce your own thyroid output, but not offer high enough replacement

Just noticed your FT3 result above. It's very low in range when that test was done but we need to see the 3 results together to interpret accurately. So what were your FT3, FT4 and TSH and how much levothyroxine were you taking when tested?

The GP didn't do T3 in the results above as the Health Board won't fund.

When I had Medichecks test the results were

T3 3.97 (3.1-6.8)

T4 15.7 (12-22)

TSH 3.1 (0.27-4.2)

These results were taken 9 weeks ago after I had only been on Levothyroxine 25mcgs for a week. I had decided to have the private blood drawn to have a baseline for the future.

Both FT3 and FT4 are low in range although TSH is not greatly elevated for a person who is not taking levothyroxine. I can see why your GP was hesitant to start you on levothyroxine. But these results do indicate your thyroid is struggling.

Since thyroid antibodies are slightly elevated, that is likely to be the reason but because you've got coexisting disease that causes inflammation then there could be other causes that need to be ruled out.

I think it's wise to be cautious in these circumstances and check out all causes because thyroid function may improve when other factors are addressed.

Sjogrens disease won't destroy your thyroid but the inflammation caused by sjogrens may alter thyroid function, especially during a flare up. So it's a little complicated. If you also have problems with iron levels this could further exacerbate thyroid function. Sometimes it's hard to determine exactly what is affecting thyroid function when inflammation is present. I think your GP has been quite helpful starting you on levothyroxine to see if it helps as many wouldn't with those results.

So many things to consider that could be affecting the Thyroid :0( I think because I was symptomatic and had raised antibodies that is why she agreed to start me on the Levothyroxine 25 but to be honest it's the fact that the TSH hasn't changed in the 9 weeks and I feel worse since starting the medication 9 weeks ago that I thought she should be increasing the dose

Symptoms of thyroid disease are the same or similar to symptoms for a number of other conditions including low vitamin levels so symptoms are not conclusive of thyroid disease.

If you increase levothyroxine and symptoms remain, they're very likely from another cause. If it's something you can address and correct like low vitamin levels then thyroid function might improve.

If symptoms are caused by Sjogrens then they won't vanish by increasing levothyroxine.

But improving thyroid function might help you to absorp or utilise vitamins better and so after a few months symptoms might improve. If they don't improve then you might conclude that improving thyroid levels with levothyroxine is not the solution to resolving symptoms.

If you can reduce inflammation then you can find out whether thyroid function improves as a result. If you can't reduce inflammation and thyroid function remains low then you'll need to just keep taking levothyroxine.

It is a bit pointless though taking 25 mcgs of levo. If you're going to give it a fair trial I'd start on 50 mcgs. As your FT3 is so low, I'd be very surprised if that caused you to be overmedicated!

Thanks I'm thinking along the same lines

If you feel worse after 3 months you could reduce slowly and stop taking levothyroxine and monitor thyroid levels to see how you feel so long as they remain within the lab range.

As your TSH is not rising particularly well with low Free's, there could be a pituitary factor involved but you would need a specialist in pituitary function to explore that.

It's something you might like to discuss with GP. I don't suppose they'll know but they might think about it, help you monitor and they are your point of contact for referrals.

It could also be that levo isn’t working as it’s T4 and the body converts T4 into active T3. However if the body has problems converting T4 to T3 the T4 only medication won’t work. A doctor who knows what they’re talking about will know this! I’d agree; find a specialist or a functional doctor who looks for root causes.

I’m under the care of one of the best U.K. endo and my thyroid is 4.7 TSH . I’ve been sub clinical

For a few years and now I’m on Levo 50 don’t know why they’ve put you on 25. Very strange

SlowDragon
SlowDragonAdministrator in reply to Shakeygirl1

If your TSH is 4.7 you are very under treated.

Guidelines are quite clear on eventual dose required, usually increasing slowly upwards

50mcg is only standard starter 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.

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.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

SlowDragon the paragraph quoted:

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.

Is this from the link GP update? I've clicked the link but it looks like you have to be a GP and register. How can I get the full article?

My TSH is now 0.7 with treatment(50) . My TSH was between 2 and 4.7 over two years monitoring

I tested neg for antibodies

Thanks for replying I have no cardiac issues and under 60 after reading many many posts on the forum it seems that 50mcgs would have been the starting dose she should have commenced me on

Thank you for starting this discussion - I’m in a very similar boat with sub-clinical but improving TSH (loading doses of D & iron helped) and Hashimotos. Consider yourself lucky that your GP tests T4 - GPs at my practice all seem to go on TSH alone. Have also been stuck on 25mg since March with TSH of 3.30 at 8 week test ( apparently fine as within range so no mention of it needing to be 2 or less). Suspect it’s on the rise but now I have the dilemma of needing a repeat prescription before I’m due another blood test so that’s likely to continue for a while 🙄

Good idea to do another Medichecks test - it will give you a good idea of the overall picture. If you do decide that an increase to 50mg is indicated you’ll soon know if you feel over-medicated. I’m assuming that’s what happened to me when I initially started on 50mg - after a week of it my pulse was racing, I was completely wired and couldn’t sleep.

Your GP’s caution may yet be vindicated but good luck educating her if test results prove otherwise!

I think we are not alone on this journey sadly. I am going to retest privately with medichecks see what the results are and then decide but I know I don't feel better but worse since starting it and nothing else has changed.

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