First results after starting Levothyroxine - Thyroid UK

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First results after starting Levothyroxine

Nini79
Nini79
24 Replies

Hi all,

I’d appreciate any advice with my current results.

6 weeks ago:

TSH was 65 (should be under 4.2)

T4 was 3.9 (12-22)

I was started on 50mg of Levothyroxine.

Results this week:

T4 13 (12-22)

T3 4.3 (3-6.8)

TSH 9 (should be under 4.2)

Antibodies 33

Crp 36

Esr 35

Vit D out of range - starting me on a supplement

Folate,B12,Mg, VitD, ferritin, iron - all within range.

I was advised to stay on the 50mg and to take Vit D and retest in 5-6weeks.

I presumed as my TSH is still slightly elevated that the Levothyroxine should be increased but Dr. said no. I’ve definitely improved in last 6 weeks but still have symptoms of hypo. Any help in interpreting these results and the advice given would be appreciated.

Thanks

Niamh

24 Replies
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SeasideSusie
SeasideSusieAdministrator

Nini79

Sigh.......... another doctor who doesn't know the NICE Clinical Knowledge Summary for treating hypothyroidism and how to titrate dose.

cks.nice.org.uk/hypothyroid...

How should I initiate and titrate levothyroxine?

•The dose of levothyroxine (LT4) should be individualized on the basis of clinical and biochemical (thyroid function tests) response. Treatment must be monitored regularly to determine an adequate dose and to avoid both under-treatment and over-treatment.

•The initial recommended dose is:◦For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.◾This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

◦For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.

•Once a stable thyroid-stimulating hormone (TSH) level is achieved and an adequate dose determined, arrange follow up to check thyroid function tests (TFTs) at 4–6 months and then annually.

With a TSH of 9 you are way undermedicated and your GP's aim should get it within range, preferably below 2 - see NHS Leeds Teaching Hospitals

pathology.leedsth.nhs.uk/pa...

Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level .......... This Indicates

0.2 - 2.0 miu/L .......... Sufficient Replacement

> 2.0 miu/L .......... Likely under Replacement

You need an immediate increase in dose of Levo - 25mcg now and rete4st in 6-8 weeks, then regular retesting/increasing until your levels are where they need to be for you to feel well. When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.

We need reference ranges for all tests to interpret them.

Antibodies 33

Which antibodies are these? I'm thinking possibly Thyroid Peroxidase. What is the range? We see <34 and <50.

Crp 36

The range for this is usually <5 or <10 so I expect this is well over range. Has your GP said anything? It is an inflammation marker but it's on-specific so if it continues to be high the reason for the inflammation should be investigated.

Vit D out of range - starting me on a supplement

What was the result? nmol/L or ng/ml?

What dose D3 have you been given?

Folate,B12,Mg, VitD, ferritin, iron - all within range.

What are the results, with ranges? Just being within range doesn't mean optimal. Consider ferritin with a typical range of 13-150, one would feel very different with a level of 13 compared to a level of 150 yet both are considered normal because they're within range. Optimal nutrient levels are needed for thyroid hormone to work properly.

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Nini79
Nini79
in reply to SeasideSusie

Thanks for the reply Susie.

I received the results over phone and tried to get all of the ranges but it was hard enough to get them for the important ones! I challenged her when she told me to stay on 50mg as my TSH was still out of range - she said she didn’t want to chance over medicating me. I told her that I still had hypo symptoms and she said they were wide and varying and could be down to low vit D levels. Not sure what to do now - Increase it myself by 25mg or make an appointment and push it further with doctor. Why do they make it so difficult.

Not sure what the antibody test was but on the blood request form “Anti-TPO Ab” was ticked. She said the upper limit was 34 and antibodies were positive.

My CRP is normally raised as I suffer with ulcerative colitis.

I don’t have the ranges for the vitamin d. I will pick up prescription tomorrow so will know then what dose has been prescribed.

Unfortunately I don’t have ranges for any of the other results. I did ask for them to be emailed but was told they couldn’t! I’m definitely changing doctor!

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SeasideSusie
SeasideSusieAdministrator
in reply to Nini79

Can you pop along to the surgery? If so then ask at reception for a print out of your results. They can refuse, it's your legal right. Don't accept verbal or hand written results, mistakes can be made, always ask for a print out.

I won't do telephone appointments to discuss results, it's too easy to be talked over, I will only do a face to face appointment.

If you increase your dose yourself you will eventually run out of tablets. You need to show your GP the evidence of why your dose needs to be increased.

If your antibodies are over range that confirms autoimmune thyroid disease aka Hashimoto's which is where the thyroid is gradually destroyed. Symptoms and test results can fluctuate with Hashi's. There is no treatment for Hashi's, it's the resulting hypothyroidism that is treated. Some people have found that a strict gluten free diet helps but there is no guar2, but it's worth trying for a few months. Supplementing with selenium l-selenomethionine 200mcg daily can also help.

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Nini79
Nini79
in reply to SeasideSusie

I tried the receptionist route but that didn’t work out. It’s different in Ireland - we don’t have free primary healthcare like you guys do with NHS. Everytime I visit doctor it’s €70 so fees can mount up pretty quickly. I don’t really wanna waste money on a go visit to argue a point with a doctor who may not see sense. I’ve decided I’m going to move to a different doctor.

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Nini79
Nini79
in reply to SeasideSusie

Hi Susie,

I managed to get print outs of my bloods today... I’m hoping u could give me some advice on what supplements I should take.

Vit B12: 307 (197-771)

Folate: 6.9 (<3 suggestive of deficiency)

Ferritin: 161 (13-150)

25(OH) Vitamin D: 28.6 (30-125)

Magnesium: 0.84 (0.7-1.0)

Serum Iron: 8.5 (5.8-34.5)

Doctor prescribed Altamira D3 25000 units capsules - 2xweekly for8 weeks to address low Vit D level but said rest were fine.

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SeasideSusie
SeasideSusieAdministrator
in reply to Nini79

Nini79

but said rest were fine.

He said they're fine because they are within range but that doesn't mean optimal.

Vit B12: 307 (197-771)

If this is pg/ml or ng/L then this is considered low according to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Serum B12 test (which this test is) gives the total B12. However, it's the Active B12 test that tells us what's available to be taken up by the cells and is a better test, although that still doesn't tell us what's in the cells, only what's in the blood.

You could do an Active B12 test if you wanted to, Medichecks do a fingerprick version of this test.

Folate: 6.9 (<3 suggestive of deficiency)

For some reason many tests come without a proper range now. Although this is over the level which suggests deficiency, if this was my result I'd want it in double figures.

A good B Complex should raise both folate and B12 - consider Thorne Basic B or Igennus Super B, both are good quality and contain the bioactive forms of ingredients.

25(OH) Vitamin D: 28.6 (30-125)

Doctor prescribed Altamira D3 25000 units capsules - 2xweekly for8 weeks

You are actually very lucky to have this prescribed, deficiency is now classed as <25 so that's the level that loading doses are given.

It's essential to retest when your loading doses have finished. If GP wont do it then do it privately with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml).

Once you've reached this level then you'll need a maintenance dose 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.

Your GP won't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council -

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and 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.

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 tablets/capsules/softgels, no necessity if using an oral spray

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. 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 tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

Check out the other cofactors too (some of which can be obtained from food).

Magnesium: 0.84 (0.7-1.0)

Magnesium is an unreliable test. However, as magnesium is one of the cofactors of D3, then I would take it.

Ferritin: 161 (13-150)

Ferritin can be raised due to inflammation or infection. Have you any previous results which show a normal level?

Serum Iron: 8.5 (5.8-34.5)

This is low. Serum iron is optimal at 55-70% through range (igher end for males) according to web.archive.org/web/2018083...

You will need to discuss your ferritin and serum iron results with your GP. Iron is complicated. If you supplemented for your low serum iron, it would take your ferritin even higher. So your GP is the best one to guide you.

Don't start all supplements at the same time. Start with one, leave it 1-2 weeks and if no adverse reaction then add the second one. Continue like this. If you have any reaction then you will know what caused it.

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Nini79
Nini79
in reply to SeasideSusie

Thanks so much for taking the time to respond Susie... lots of great info to get me started.

Vit B12 - the units were ng/L. I will get the active B12 tested and get one of the b complex supplements you recommended.

Magnesium - should I take a separate magnesium supplement or a multi Vit/mineral supplement?

Ferritin - my CRP and ESR were elevated. I was just getting over a chest infection when the bloods were taken. My inflammation markers would normally be elevated as I have UC. I have a copy of bloods from 2 years ago and my Ferritin was 127ug/L (13-150). My CRP was 10mg/L(0-5) so elevated but not as bad as they are currently.

On the results from 2 years ago My TSH was 10.02mlU/L (.27-4.2) and my free t4 was 11.6(12-22) and free t3 was 1.88 (1.3-3.1) and I was still refused Levo as dr said I was borderline. Had been getting the same answer for so long that I gave up after that test and only when the results came back so bad 6wks ago that I was started on Levo.

Iron - so I should hold off on taking any iron supplement until my ferritin level has dropped?

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SeasideSusie
SeasideSusieAdministrator
in reply to Nini79

Vit B12 - the units were ng/L

ng/L is the same as pg/ml so the quote above is relevant and your level is low. If you're going to do the Active B12 test then it's best to do it before starting the B Complex.

Magnesium - should I take a separate magnesium supplement or a multi Vit/mineral supplement?

Separate, choose the one most suited to your personal needs. Multivit/mins are generally a waste of time and money, they contain too little of anything to be of much use where levels are low, and tend to contain the wrong and least absorbable forms of the active ingredients.

Iron - so I should hold off on taking any iron supplement until my ferritin level has dropped?

I don't offer any suggestions about iron supplements. It's far too complicated because there's so much involved. Best to discuss with your GP.

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Nini79
Nini79
in reply to SeasideSusie

Thanks Susie.. will discuss iron with GP. I just edited my previous reply last with results from 2 yrs ago if u have time to have a look.

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SeasideSusie
SeasideSusieAdministrator
in reply to Nini79

On the results from 2 years ago My TSH was 10.02mlU/L (.27-4.2) and my free t4 was 11.6(12-22) and free t3 was 1.88 (1.3-3.1) and I was still refused Levo as dr said I was borderline.

Your doctor was negligent and would be better off in another career.

TSH over 10 and FT4 below range - what more proof could he need, that is overt hypothyroidism, clearly stated in the NICE Clinical Knowledge Summary, absolutely nothing borderline about those results

cks.nice.org.uk/hypothyroid...

Blood tests for thyroid stimulating hormone (TSH) and free thyroxine (FT4):◾Diagnose overt hypothyroidism (OH) if TSH is greater than 10 mU/L and FT4 is below the reference range.

If you are still seeing the same GP, maybe you will be tempted to point this out to him and thank him for wasting 2 years of your life and making you suffer. I really, really, really can't say what I'm thinking about this doctor.

Also, apologies, just looking back I missed this before

Not sure what the antibody test was but on the blood request form “Anti-TPO Ab” was ticked. She said the upper limit was 34 and antibodies were positive.

Raised antibodies suggest autoimmune thyroid disease aka Hashimoto's which is where the thyroid is attacked and gradually destroyed. Fluctuations in symptoms and test results are common with Hashi's.

Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies and this is probably why your levels are low.

By the way, most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms.

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Nini79
Nini79
in reply to SeasideSusie

Thanks Susie... I was fighting for years to be medicated as my mam has hypo and I had the same symptoms she had. I’m definitely changing doctors - just trying to pick a good one who will listen to me. I really appreciate all the help and advice - there is so much info to take in but I’m going to start gradually introducing all the changes suggested. Thanks again x

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shaws
shawsAdministrator
in reply to Nini79

The medical professionals seem to not know anything at all with regard to blood tests and results for thyroid hormones. B12 and Vit D are actually pro-hormones, therefore we need optimum as well as all other vits/minerals.

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SlowDragon
SlowDragonAdministrator

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Come back with new post once you get vitamin and antibodies results and ranges

Your GP is WRONG

See a different one or email Dionne at Thyroid Uk for list of recommended endocrinologists who are thyroid specialists

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)

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Nini79
Nini79
in reply to SlowDragon

Thanks for the tips. I’m in Ireland so we don’t have online access. I did try go the receptionist route but was told they didn’t have access to them. I’m definitely going to try a new GP and hopefully they’ll be more open to sharing my full results.

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HiddenThis reply has been deleted
Nini79
Nini79
in reply to Hidden

Thanks for your advice. It’s good to know the levels I should be aiming for. Just to be clear I wasn’t stating that TSH should be under 4.2 - I was just relaying what doctor had told me.

I read about the tips in previous posts about getting bloods. So I had them done at 9am and took my Levo afterwards.

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shaws
shawsAdministrator
in reply to Nini79

It comes as a shock to realise that most professionals are under the misaprehension that a TSH of below the top of the range (5) is fine. They are also under the same viewpoint that we will become hyperthyroid if TSH is 1 or lower. Untrue. Once diagnosed and prescribed, the aim is a TSH of 1 or lower with FT4 and T3 in the upper part of the ranges.

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HiddenThis reply has been deleted
Nini79
Nini79
in reply to Hidden

I’m working on it ;)

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waveylines

Feel for you Nini79-good advice posted.....& knowledge is most certainly power. My GP doesnt particularly like it but these days they rarely argue as they know I can argue my corner very well.

Different GP excellant idea. Take the guidelines for treatment along with you too.

Its shocking that GPs are so often poor at treating hypothyroidism optimally but you can learn & guide them! 😊😊

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TSH110

You should ask ThyroidUK for the Anthony Toft article that states TSH should be between 0.2 and 0.5 and free T4 and free T3 in the upper third of the range for optimisation (he is highly regarded, now retired and was physician to the Queen when she was in Scotland so what’s good enough for her Maj is good enough for you!) take a copy plus those Nice guidelines give them to her tell her you need an increase and just sit there until she gives in and increases your dose. Perhaps it will be a helpful education for her and help to improve her practice and knowledge of treating thyroid disorder. If she is still too stupid to budge you must find a decent doctor. Leaving you with a TSH of 9 is disgraceful.

Also ThyroidUK is recommended by NHS Choices if you should get the ‘you should not use the internet for health matters’ line from her. I’d be dead if I had just listened to the supposed health professionals.

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Nini79
Nini79
in reply to TSH110

Thanks so much for the advice. I will definitely try get a copy of that article - I need all the backup info I can get! Should I just email thyroid Uk?

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TSH110

I think you email Dionne - i’ll Try and find the email and post for you:

It is:

tukadmin@thyroiduk.org

Ask for the Anthony Toft article from pulse about optimised blood tests I am sure they will know the one you need say you want to show it to a doctor that is keeping your TSH at 9 despite you having hypothyroidism

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Nini79
Nini79
in reply to TSH110

Great... thanks so much x

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