Test redults

[veryangirl44]

Hi please can anyone tell me if I should reduce my meds like my Dr wants me to even though I know it will make me poorly as they have been reduced before. My tsh is. 38 and my t4 is 26. Thank you I currently take 200mg thyroxine

[SeasideSusie Remembering]

veryangirl44 Do you have the reference ranges for your results? It would help to know if your TSH is under range or just low in range and whether your FT4 is over range and by how much. You can edit your post by clicking on the down arrow and choosing Edit and put the ranges in.

The aim of a treated hypo patient is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their ranges and for you to feel well.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, wrote this in a Pulse Online magazine article:

"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)."

If you email [e-mail] she will let you have a copy of the article which you can print out and show your GP.

What I would do in your shoes is tell your GP that you feel well on your current dose and don't want to be unwell again, that you would want to see the result of a FT3 test, following the advice of Dr Toft, before I would consider a reduction in dose and only if your FT3 is over range would you be willing to reduce.

[veryangirl44 in reply to SeasideSusie]

Thank you for your reply I'm sorry I don't know the ranges but I have the Dr on the 21st this month I will ask then. I am going for my results of my t3 test. Which I had to be for. I have been under for about 26 years now. I have been upto 225 but agreed to reduce to 200mg since then I just feel naff I am always tired or should I say totally drained.

I'm 44 and had a op for a cyst on my ovary and only then when I was in hospital I read in a magazine about underactive thyroid symptoms it described me.

I went to the Dr and was almost laughed at when I said I thought I had a thyroid problem. Reluctantly she did a test which showed I was severely under I started on 100 mg.

Thank you for your adviceI

[SeasideSusie Remembering in reply to veryangirl44]

veryangirl44 Ask your surgery for a print out of your results every time. You are entitled to them under the Data Protection Act 1998. They can't refuse but may make a small charge for printing. When you've got your FT3 result, come back for members to comment.

For future reference, when having blood drawn for a thyroid test always book the first appointment of the day, fast from the night before (water only, breakfast when you get home), and leave your levo off for 24 hours, take it after the blood draw, that will give you the highest TSH possible which is what you need when you don't want your levo reduced.

I hope your doctor had the grace to apologise when your original tests showed you to be underactive as you thought.

[veryangirl44 in reply to SeasideSusie]

I will ask on the 21st. I have been having tests the way you say luckily I learned that but thank you again for your advice it's so valid to me. And sadly no i did not get any apologies. I have never been referred to an endo but the Dr I might add my new surgery Dr she seems great she is the one who when I first saw her refused a t3 test now six months on agreed and said if my t3 comes back normal she will look to sending me to an endo. I will keep my post updated many thanks.

[Marz in reply to veryangirl44]

veryangirl44 - are you in Cornwall ? I have noticed on this forum that there are very few good Endos around in that area. Stick with asking questions here - lots of very knowledgeable people who will have you well in no time

Good you are having the T3 tested - at last. It is so important to have this result - and yet almost the 44,000 people on this forum have struggled to have it tested.

Wishing you well .....

Ooops - just seen your post below - so yes you are in Cornwall.

[veryangirl44 in reply to Marz]

Hi im in st ives I moved here about six months ago when I first moved here being a new Dr I asked if they do t3 tests and was told no but I saw the same Dr again and she agreed after my thyroid results come back to test my t3.

I'm sure it will come back OK but I need for piece of mind to know the results then I can focus on what's going wrong maybe somewhere else.

My Dr did say if it's comes back normal she will think about referring me to an endo.

I could of asked the receptionist for my results before now as mydr is away but I wanted to see the same Dr so I though I might as well just wait.

[Marz in reply to veryangirl44]

Just remember when a GP says * normal * they mean in range. WHERE you are in the range is so very important.

Oh - I used to live in St Ives and moved here to Crete from Truro in 2004 😊

[veryangirl44 in reply to Marz]

I was in Veryan near St mawes before here my daughter is in Truro. Have you been in create long sounds great x

[Marz in reply to veryangirl44]

Yes since 2004. Yes I know Veryan well. I also once lived in Tregony. Was disgnosed here in Crete after a lifetime of beiing ill.

😊

[Gardenofeden in reply to SeasideSusie]

I have always been told that free t4 needs to be middle of it's range and free t3 should be in the upper quartile of its range.

Ughghghhhh..I'm so confused

[veryangirl44 in reply to Gardenofeden]

I find it all confusing to. I also get frustrated how many times my results have changed over the years I started on a 100 then went to 159 then went to 200 thnI moved to Cornwall they reduced me to 150 then upped me to 175 then 225 now back down to 200. Now new Dr want to reduce me again. This is why I joined this group. This has been going on for twenty six years.

[SeasideSusie Remembering in reply to veryangirl44]

veryangirl44 That used to happen to me for the first 20 years, when I didn't know anything and nothing was explained nor was there the information available to us that is now.

My bloods were taken at random times, sometimes morning, sometimes afternoon, usually after I had eaten. No wonder the results gave wildly differing TSH results that prompted the dose changes. Now I know better and always have a very early appointment for blood draw, leave off thyroid meds for 24 hours and don't eat beforehand, so there is a direct comparison each time because the circumstances are always the same.

If that criteria is met every time then there is another reason for dose changes and we need to ask questions, get our results, ask for further tests if necessary eg both antibody tests and FT3 but that's the stumbling block, actually getting the tests done

[veryangirl44 in reply to SeasideSusie]

I learned so much from one thyroid UK meeting about two years ago it was fantastic and since joining groups like this my knowledge has improved so much. I now always get my bloods done how you say but for many years I didn't. Finally I'm waiting for a t3 test result. I feel like I'm constantly in the Dr

[Marz in reply to veryangirl44]

veryangirl44 Your dose should NOT be adjusted based on the TSH alone - only when the FT3 is over range are you over medicated ..... depending on how much of course .

[SeasideSusie Remembering in reply to Gardenofeden]

Gardenofeden It's really a case of they need to be wherever they need to be for the individual to feel well. One size does not fit all.

It's *generally* said that TSH should be 1 or below and FT4 in the upper third and FT3 in the upper quarter of their ranges.

Dr Toft says "it's likely" that free thyroxine will be in the upper part of the range and "most patients" will feel well in those circumstances. So it's not set in stone. It's an individual thing and we all have to find our own best place.

[veryangirl44 in reply to SeasideSusie]

I learned from the thyroid UK meeting that the tests was done in the 1950s and did not take into account age sex etc so it does make sense to me to stay at a dose a feel I can at least function on thank you again for your help.

[helvella Administrator Thyroid UK in reply to veryangirl44]

It really doesn't matter what happened in the 1950s.

Every manufacturer of every test available has done considerable numbers of tests since then. I expect that they regularly perform additional evaluation tests to ensure they continue to perform as they should. Also, many labs also run their own tests.

[veryangirl44 in reply to helvella]

Thank you for this information. Can you please tell me if it makes a difference if you have your doses made by different manufactures. I was told to make sure I take tablets from the same manufacturer but the Dr said its not true. Thanks

[helvella Administrator Thyroid UK in reply to veryangirl44]

When I first started levothyroxine I was determined that the manufacturer would make no difference to me. I swapped among makes without any care. (I did very much believe manufacturer made a difference for some people.)

Now I have experienced differences and they are very real. Don't expect to be able to change without any impact.

[veryangirl44 in reply to helvella]

I'm determined to get as much advice as possible to try change the rest of my years I have to be for the better. So thank you once again I really appreciate your help

[SlowDragon Administrator]

If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

They are often low if we have thyroid issues.

Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo. NHS rarely checks TPO and almost never checks TG.

(NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this. )

As SeasideSusie says....Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out.

Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.

When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

If you can not get GP to do these tests, then like many of us, you can get them done privately

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

Blue Horizon - Thyroid plus eleven tests all these.

This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after).

This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

Assume you know that Levo generally should be taken on empty stomach and no food or drink for at least hour after. Many of us take on waking, some prefer bedtime, either as more convenient or perhaps more effective. No other medications at same time, especially iron or magnesium, these must be at least 4 hours away

Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this.

You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's too.

[veryangirl44 in reply to SlowDragon]

Thank you I do take my meds in morning with just water and nothing for at least half hour. My foliate was high so they are resting and will get results on 21st with t3. they are checking ferretin as well. I'm so greatful for your help

[greygoose in reply to veryangirl44]

A whole hour is better.

No B12 result, They are daft, testing folate without B12, the two work together. And low B12 can cause the most terrible symptoms.

[veryangirl44 in reply to greygoose]

I will ask about the b12 thank you I hope I have not got that wrong and they are testing it. I also am having my inflammation checked again as it come back raised again. Thank you for you advice

[greygoose in reply to veryangirl44]

You're welcome.

[Marz in reply to veryangirl44]

veryangirl44

b12deficiency.info/signs-an...

Scroll down in the above link to view the view the neurological signs and symptoms of B12 deficiency. You will know more than your GP when you read all there is on the above site - and that is SO important. Your GP will declare you normal when bumping along the bottom of the range. Your level needs to be around 1000. I have weekly injections - living in Crete has its good points - we can buy over the counter without a prescription - yipee !

[veryangirl44]

I have been to the Dr for my t3 results so here goes

My free t3 normal at 5.2prol/L range u 3.1-6.8

My tsh is 0.019 miu/L range 0.27-4.2

My t4 is 27.1pmol/L range u 12.0-22.0

My red cell foliate is 7.9ng/ml range u4.6-18.7

C reactive protein is 3.6 mg/L range u 0-5 on 29/07/2016 this was 2 so not sure why that's gone up.

Ferretin is 219 ug/L range u 13-150 so high and has gone up from 201 ug/L since july

I can't see a b12 result plus in July my tsh was 0.073 range 0.27-4.2 I can't find the t4 result in the printout and different to my original results O posted on here as per what the Dr told me from screen but I have no idea why my tsh has changed so much in a month I'm going to have to ask again about last month t4 result and get the print out.

I have agreed to lower my thyroxine from 200 to 175 alternatively as I felt worried reducing it to 175 straight away as I felt it was to much of a drop in one go.

I'm so sorry for the wrong results first message I went by what I was told I'm so glad I remembered to get the print outs as suggested here thank you.