Confused! : I posted my results a few weeks back... - Thyroid UK

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Confused!

Brownie49 profile image
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I posted my results a few weeks back which were

TSH 4.15 range 0.30 - 3.94 and T4 13.6 range 12.30 - 20.20.

I was put on 25mcg of levthyroxine but I don't feel any better and have gained an additional 8lb since being on meds. I have been back to the docs who have retested and TSH is now 2.85 and no results for T4 as they say I am now in range. My antibodies came back normal 17.2 Docs have now stopped my medication even though I feel so ill, I can't exercise any more and can hardly walk. They have recommended anti depressants and to take a week of work to rest! So I am going to get my own checks done but I am confused is T3 the same as FT3, please can someone advise me?

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Brownie49
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Clutter profile image
Clutter

Brownie49,

Your GP obviously doesn't understand hypothyroidism. You really don't need to do your own thyroid tests. You need a GP capable of understanding the tests you have already done and able to treat you properly. Please see another GP at the practice. They're not supposed to stop the Levothyroxine when thyroid levels are within range. It is the Levothyroxine replacement which raised the thyroid levels and reduced the TSH.

You were undermedicated on 25mcg because although TSH 2.85 is within range it is still high for someone taking Levothyroxine.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range but at least 15.0. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org on Tuesday after the Thyroid UK Conference if you would like a copy of the Pulse article to show your GP.

Brownie49 profile image
Brownie49 in reply toClutter

Thank you clutter, I have seen 4 different doctors 3 of which have tried to out me on anti depressants and the last doctor who put me on The meds said she would not up the meds but stop them. She is sending me for a ultrasound of my thyroid because my neck hurts all the time. I can hardly function and am sick of my health suffering. I will email on Tuesday to get a copy of the pulse article. So you don't think it worthwhile doing a T3 T4 test?

Clutter profile image
Clutter in reply toBrownie49

Brownie49,

What point is there in paying for tests which your doctors will ignore? Your FT4 will be higher than 13.6 because that's why your TSH has reduced.

Your TSH was over range at 4.15 so I don't understand why the doctor said she would take you off Levothyroxine when it did it's job and raised your FT4 and reduced your TSH to 2.85, although not sufficiently.

SeasideSusie profile image
SeasideSusieRemembering

Brownie49 Unfortunately, it appears that you have a GP who hasn't a clue about how to treat hypothyroidism.

Firstly, looking at your previous thread, you have been on Levo for 6-7 weeks now at a low starter dose of 25mcg. Some people do feel worse to start with, and only start to feel better when Levo is at a dose a fair bit higher than yours. It can take months to find your optimal dose and to feel well, so patience is needed I'm afraid.

But, you have an idiot for a doctor. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo. You've had a reasonable start for someone on 25mcg, your TSH has reduced from 4.15 to 2.85, so it's going the right way. What you need now is an increase in dose so that your TSH continues to reduce and your FT4 and FT3 should increase.

By taking you off your Levo your GP has now guaranteed that your TSH will rise again and you will become more hypothyroid. It needs explaining to him that Levo doesn't work like aspirin, it wont make your Hypothyroidism go away. It is a replacement hormone. Your own thyroid doesn't produce enough hormone, so you have to have synthetic replacement. I think maybe he bunked off the afternoon when the lecture on thyroid disease took place at med school!

You now have to persuade your doctor that you have to have your Levo back, and at a higher dose than 25mcg. The next step is 50 mcg.

Please see thyroiduk.org.uk/tuk/about_... > Treatment Options

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor.

Also -

Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor in support of reinstating your Levo and increasing the dose.

Retesting and increases of 25mcg should be done every 6-8 weeks until your symptoms abate, you feel well, and your results are at a level more appropriate to a treated hypo patient.

**

Can you see a different GP?

greygoose profile image
greygoose in reply toSeasideSusie

It's another amazing thing, isn't it, that some doctors think levo is a cure for hypothyroidism, that it makes the thyroid work again. I've seen several times on here people saying that their doctors said that their thyroid is 'now working properly' because their TSH had gone down into range. And, I once had a doctor like that, myself. He was utterly amazed when I explained to him that that's not how it works.

So, what with that, and their 'confusion' over Hashi's and antibodies, it really makes you wonder what they learn in med school, even if they do attend the lecture that day! Maybe we should write a little booklet for them, explaining how it really works! lol

Brownie49 profile image
Brownie49 in reply togreygoose

It's frightens me that we put our lives in these so called doctors and they do not listen to our symptoms. 10 years I have these symptoms so I went to a new training doctor who finally said I think have an underactive thyroid! Finally someone listened, unfortunately he has left and now I'm back to square one.

greygoose profile image
greygoose in reply toBrownie49

They don't listen because they've already decided what's wrong with us : we're women, so we're obviously suffering from anti-depressant deficiency! :D

Brownie49 profile image
Brownie49 in reply togreygoose

True, I've been told told its my age and its menopause so many times.

Brownie49 profile image
Brownie49 in reply toSeasideSusie

Thank you, does this mean I will be on levothyroxinefor the rest of my life?

SeasideSusie profile image
SeasideSusieRemembering in reply toBrownie49

Yes. Your thyroid gland doesn't work properly, it doesn't produce enough thyroid hormone. You have to replace that hormone. Levo is not a drug, it's a hormone.

Brownie49 profile image
Brownie49

Thank you all so much for your advice. Back to the GP again.

SlowDragon profile image
SlowDragonAdministrator

Ask for vitamin D, folate, ferritin and B12 to be tested

Say the NHS thyroid support group recommends these are tested

Highly likely one or more will be low, then our own or synthetic thyroid hormones can NOT work

Low stomach acid is common when hypo, causing low vitamins, which lowers thyroid.......etc

Medics have little idea about this gut connection

If you get nowhere private testing is an option

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and if taking Levo don't take it in the 24 hours prior to test, delay and take straight after.

Brownie49 profile image
Brownie49 in reply toSlowDragon

Folate 3.2 no range given

Vit b12 771 range 197 to 771

Ferritin 24 range 13 to 150.

I have PA so have b12 jabs and I am taking folic acid and Vit d.

I have also had my gallbladder and diagnosed with fatty liver disease.

SlowDragon profile image
SlowDragonAdministrator in reply toBrownie49

Ferritin is too low. Read SeasideSusie replies on vitamins

So you have PA which is autoimmune disease and are therefore at far higher risk of another- i.e. Thyroid disease

So unbelievable that your GP is being so ignorant about thyroid

Post your vitamin D result- it needs to be over 70nmol/L and over 100 might be better

When having B12 injections it's recommended to also take good Vitamin B Complex

But remember to stop taking any supplements with biotin before any blood tests as biotin can falsely affect test results

Brownie49 profile image
Brownie49

They have tested, have put those results two comments up, they keep telling me my Vit d is too low but don't do anything about it, I have brought from Holland and Barrett Vit d3 25ug. Had more bloods taken and called up to find results and make an appointment to be told the doc says it's all clear she doesn't need to see you. I have said over the years I think I have an underactive thyroid as my dads side of the family have it, they say its not hereditary! The training doctor said i might only be sub clinical hypo. They are now putting forward for a ultrasound on my thyroid as the area constantly hurts. Fed up with it, I just want to feel normal. This forum has been brilliant for advising me.

SeasideSusie profile image
SeasideSusieRemembering in reply toBrownie49

Brownie49 What is your Vit D level?

Your H&B 25mcg D3 is 1000iu. That is barely a maintenance dose, my maintenance dose (and my Vit D level is optimal) is 2000iu daily during winter and summer.

You need a dose high enough to raise your level to that recommended by the Vit D Council (which is 100-150nmol/L) and once you reach that level you find a maintenance dose to keep you there. And if it's this one hollandandbarrett.com/shop/... it's rubbish, like all of H&B own brand supplements.

Take a look at the ingredients

Bulking Agents (Dicalcium Phosphate, Microcrystalline Cellulose), Emulisifier (Acacia Gum), Sucrose, Anti-Caking Agents (Magnesium Stearate, Silicon Dioxide), Starch, Vitamin E (dl-Alpha Tocopherol), Tricalcium Phosphate, Vitamin D3 1000iu. 250 tablets for £9.24

Now look at a good quality D3 bodykind.com/product/2463-b... and it's ingredients

D3 5000iu Extra virgin olive oil, softgel capsule (gelatine, glycerin, purified water). 360 softgels for £13.95 at a much higher strength so probably more than a year's worth depending on how much you need.

Also, D3 is fat soluble, it needs to be taken with some dietary fat, there is already some in the softgels.

There are important cofactors needed when taking D3

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.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

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

naturalnews.com/046401_magn...

Check out the other cofactors too.

**

What's happening about your ferritin at 24? This is far too low. For thyroid hormone to work ferritin needs to be at least 70, preferably half way through range. If you're not taking an iron supplement, then you need one. Also you can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

Brownie49 profile image
Brownie49 in reply toSeasideSusie

Thank you SeaSideSusie I am going to buy these vits. You say you take these summer and winter, do you not take them in spring and autumn? Unfortunately doctor said she was only going to print one page and it doesn't show Vit d results but she did say they were low and that they wouldn't treat it until my TSH was in range. Today the doctor didn't mentioned it.

SeasideSusie profile image
SeasideSusieRemembering in reply toBrownie49

Yes, I take my maintenance dose all year round.

You need to know your level before you start any D3. You need to know how much to take. If you can't get your result off your GP then do a fingerprick blood spot test with City Assays vitamindtest.org.uk/

Post the result and we can suggest what dose.

Brownie49 profile image
Brownie49 in reply toSeasideSusie

I wil phone the docs on Monday and ask.

Brownie49 profile image
Brownie49

I managed to get a doctors appointment today as I feel so rough, yet another doctor telling me there is nothing wrong with me and I am fixated and it's all in my mind! Tried to put me on anti depressants and said I need to see a counsellor to manager my anxiety and to give me breathing lessons for when I am breathless. i told him my TSH may be in range but it's still to high and needs to be under 1 to feel well so I need my meds upped. He blantently refused and said I had mental issues that need resolving. I ended up getting up and told him he needs to do research, it seems I know more than him and his the doctor. I said I wasn't happy with his patronising manner and he better speak to a senior consultant and call me back! So finally I got my meds upped to 50mcg and told I was not going to have them upped any higher and the medication will not be stopped! Amazing I had to lose my temper to be listened to, so unnecessary. Thank you everyone for advise that made strong enough to stand up for my health.

Brownie49 profile image
Brownie49

Frustrated! Went back yo the doctors to tell them I have put on a stone on in weight since taking Levo. I asked as I have fatty liver disease could I be having difficulty with my metabolism? Some of my symptoms have disappeared. She advised I should be losing weight and that I should be attending slimming world! I have been telling them for 10 years I cannot lose weight no matter what I do. I asked if my t4 and t3 be tested and she said no they are not allowed to. She offered me slimming pills which I refused. I asked about my my Vit d and ferritin bein too low and she said there is nothing wrong you are low but within range. I was then asked not to go back to the docs for another 3 months as there is nothing they can do! I am so breathless I can barely walk up stairs or do the hoovering. I really don't know what to do.

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