Thyroid UK
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Thyroid

My update- As suggested by yourselves I went to see my GP to ask for all 11 elements to be tested showing him the list from Blue Horizon. Looking through my records online he said that all these have been checked already over the last couple of years and are within the ranges as per NHS guidelines. He said that I would be wasting my time going to the expense of private blood tests with Blue Horizon and Medicheck and why should they offer a superior view to NHS labs. He has never heard of Thyroid UK and asked me to tell him why they have it right and the NHS has got it completely wrong. He suggested I should forget about private blood tests and ask for a second opinion with a consultant specialising in endocrinology through BUPA , Spire or Fairfield. In the last 2 years I have been attending an NHS hospital Endocrine section in Liverpool and seen 3 different consultants and two endocrine nurses and they are happy that the TSH T4 and T3 are within the ranges. My GP stated that they do not normally test for T3 as it is not necessary

I am now completely on my own because this fatigue I have is 40 years old and I am not prepared to bow down and worship the NHS as some doctors are asking me to do. I shall go ahead with a private blood test through Blue Horizon or Medicheck and take it from there. My only question with Thyroid UK is does the advice given to me come from a qualified doctor .

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The advice given on this forum is from members who aren't medically qualified.

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Thyroid UK Forum features on the website NHS Choices as an approved source of information. Also a thread running live with the posts from here !

nhs.uk/conditions/underacti...

Scroll to the bottom for the posts !

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Thank you for your reply. Obviously my question about whether the advice is given by qualified doctors has wound everyone up.I did not mean to be disrespectful.

I have subscribed to Thyroid UK this week and will be attending one of their meetings in Liverpool this week. You have all answered my question perfectly. I shall give you my blood test results below as my doctor has always given me a printout whenever I have had tests done.

Last test done 24th Aug 2017 Level of Thyroxine 75mcg

TSH 0.55 mU/L 0.30 to 6.00 Free t4 15.1 range pmol/L 10.0 to 22.00

no mention of T3 on letter

Previous test Nov 2016 Thyroxine dosage 100mcg TSH 0.22 Range 0.30 to 6.00

Free T4 17.6 range 10.00 to 22.00 Free T3 4.7 range 3.6.to 6.4

Other tests last done March 2016 Serum calcium low at 2.19 range 2.20 -2.60

Serum total 25-OH Vit D 82 nmol/L range 75.00 to 150.00

Serum vit B12 normal at 255 ng/L range 181 to 910 ng/L

I feel that I have to start from scratch again and have an up to date private blood test done for the items that you have stated in previous posts as my doctor is not prepared to do this. As soon as I have the results I will post them to you .

Thank you

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Noone is wound up - you can be forgiven for thinking so ! We are mostly feisty gals here who have battled the odds and come out the other side. For many of us it has been a long journey. We also get incredibly cross with useless Docs not understanding the thyroid blood tests. It is not rocket science. Most members have been here longer than me answering questions and I have been here for six years 😴 - so 1000's of questions and 1000's of answers ....

Post your new results in a new post ....

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Delboy25,

"This is a patient to patient forum and no one, including the Admin team, on this community should be assumed to have medical training of any sort.

Everyone is only speaking from their own experience, that of friends/family or other people they may have spoken to."

healthunlocked.com/thyroidu...

Your GP is wrong about T3 testing being unnecessary. It is low T3 which causes hypothyroid symptoms. Simply having T4 and T3 in range isn't enough. To feel well levels need to be optimal.

If you see BUPA, Spire or Fairfield consultants as your GP suggests you will require private blood tests unless your GP is prepared to run the requested tests.

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Do you have copies of your blood test results with ranges - the ones your GP insists are fine. You are legally entitled to have copies so you can monitor your health and post with more information here. Reading your earlier posts I am wondering if you have Hashimotos and I feel that the Private Testing route would be the best way for you to take control of your own health. Difficult for member to advise without results :-)

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None of the information posted on the forum are by people who are medically qualified otherwise they would be charging good money for good information.

Unfortunately, as your GP quoted " Thyroid UK and asked me to tell him why they have it right and the NHS has got it completely wrong."

It was the NHS who selected Thyroiduk.org.uk to give specific information so TUK was the NHS's choice.

There is a very, very easy and absolutely correct answer and that is - if the NHS Endocrinology, doctors and the Guidelines were correct and levothyroxine alone relieved all clinical symptoms they would be right and there would be absolutely no need for a forum such as this.

As it is with a membership of +70,000 members who have been failed with these guidelines and left to suffer - or at the very extreme - committed suicide or are unable to work, relationships shatter due to doctors saying they are not unwell - it's all in the mind and, by the way, here are some anti-depressants, pain relief, antacids etc. instead of fixing the main problem first and that is thyroid hormone replacements which suit the patients and not the Endocrinologists or doctors.

Why, for instance, did your doctor say:-

"My GP stated that they do not normally test for T3 as it is not necessary"

straight away this tells us on this forum that this is someone who should be avoided (His other patients with hypothyroidism may be fine - or nearly fine on levothyroxine and wont be bothering him. I'd like to ask him how many more prescriptions do these patients get when on levothyroxine. That would be interesting to know.

He doesn't know that the 'driver' of our thyroid hormones required in all of our T3 receptor cells is T3. Is he aware that levothyrloxine T4 is inactive and has to convert to T3 and that's why we need to know how much FT3 is circulating?

Many on this forum source their own thyroid hormone replacements and this is one who was helped where doctors/endocrinologists couldn't - wouldn't - except for one brave doctor who provided something other than levothyroxine and she now has a case before the Scottish Parliament.

hypothyroidmom.com/suicide-...

It's only due to this forum and all of the members who've undergone very poor diagnosis/treatments/restricted to one thyroid hormone who can help others undergoing the same, repetitive consultations/results.

It is a relief to find like-minded suffers.

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Your doctor should be aware that a lot can happen in two years, and saying that something was within range two years ago is no guarantee that it is a) optimal now, or b) was even optimal two years ago. 'In-range' is not the same thing as 'optimal'. He has just proved, out of his own mouth, why NHS doctors cannot be trusted!

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I see from your other post you had thyroidectomy. So it's highly likely you have low FT3. How would your GP know ......he's never tested it

If the treatment was so good on NHS there wouldn't be 70,000 members on here

As Dr Michael Moseley said "I get more correspondence about thyroid issues than all other illnesses put together" ..........that was in his introduction on Thyroid and T3 on "Trust me I am a doctor" .......

Debate on T3 in Scottish parliament last week

scottishparliament.tv/meeti...

Suggest you get full testing done and

Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly

dionne.fulcher@thyroidUK.org

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Your March 2016 your vitamins D and B12 were much too low. Also your Calcium level was low in range. Both low vits D & B12 give symptoms of mental health issues, depression, anxiety etc. I'm not sure how one increases calcium levels as I believe we're not meant to take just Calcium supplements, we need to add something to it. You could do another post asking that question. I will PM you with the Special way of eating that has turned my life around since August. I know exactly how you are feeling and it stinks :-(

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Marigold take Vitamin D for calcium levels.

My physiotherapist/Pilates teacher is always telling us it’s vitamin D we need for strong bones - milk is for baby cows. I’ve just googled this list of vitamin D foods for you draxe.com/top-10-vitamin-d-...

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Thank you Marigold for your reply .

I do have mental health issues -The fatigue is causing cognitive dysfunction affecting concentration, memory and powers of decision.

I have been in front of 5 psychiatrists in the 40 year history of my case not one of them has done any kind of blood test . They asked if I was on any kind of medication I told them I was on Thyroxine . Only 1 psychiatrist I rated because he wrote to me saying he was baffled by the fatigue factor and he felt the Thyroid had something to do with this.

Three of them interviewed my parents and said that I definitely did not have depression we have given you anti depressants they have not worked and that is proof it is not depression plus you do not get fatigue with depression. That I had a mental illness caused by frustration and that it was all to do with my personality and nothing could be done about changing it .I was advised to go home decide what I wanted to do with my life or stay on Incapacity Benefit for the rest of my life we all grow old and die ..

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delboy25 During my 35+ years of thyroid illness, I have once been an in-patient in a psychiatric unit (at my own request as I felt insane), and once as an out-patient (when I wanted to jump in front of a train). Both consultant psychiatrists. I told them both I had a hypothyroid problem, but not once any blood tests. Only anti-depressants. They both went over and over my childhood, homed in on the fact my uncle was schizophrenic, but both decided ultimately No psychiatric illness. I really wish I could sue them both for extreme negligence. You certainly need to take your health into your own hands. That's the only way I got better. Get those private blood tests (you must include the two thyroid antibody tests), then do a Post on here with them. So many years of our lives are totally wasted..... total travesty. I will Follow you to see how you get on.

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P S Take a look at my newly updated Profile.... tells the whole sorry saga

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Thank you Marigold - I am meeting up with numerous people in Liverpool this afternoon all members of Thyroid UK very convenient after only joining Thyroid Uk in the last week.

I will telephone Blue Horizon tomorrow- I like the look of their Thyroid 11 test will ask local pharmacy if they will take blood sample as I cannot see the phlebotomist at GP's practice helpling me now after yesterday's comments from them. Will post results asap.

Thank you

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The people on here may not be medically qualified but boy will you learn a lot if you stick with this site. Someone somewhere is almost guaranteed to have experienced experienced anything you might be wondering about.

I ended up using Blue Horizons because no one in all the time I was being treatedfor Graves Disease ever tested my T3. I now use their Thyroid 11 Home fingerprick test. Saves pleading with my doctors and the results pop into my inbox a day later - no long wait then no battle with the receptionist to get my results. You see exactly what theresults are for yourself.

‘In range’ is my most hated phrase. It is followed hotly by ‘fine’ ‘ok’ and ‘good’, assuming that you are not feeling well, none of those terms mean that your levels are optimal for you.

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I will be using Blue Horizons in the next day and going for the Thyroid 11 test. I did show the printout from Blue Horizons to my GP yesterday he said all 11 elements of test have been tested in the last 2 years and are all within the ranges set in stone by NHS guidelines. He has never heard of Thyroid UK and I am now told by people on this website that it has been recommended by NHS Choices. My GP told me all the way through his training not to read newspapers suggesting remedies for various illnesses if it did not have references to University Research. To me the Universities in this country have got the thyroid horribly wrong. The GP advised me to get a second opinion possibly at a Spire Hospital- It was not until last night whilst scanning through the Blue Horizon website that if I had a private consultation with Spire the blood test would probably be done by Horizon. With regard to a second opinion I have been under Endocrinology for the last 2 years seen 3 different specialists in the Thyroid and 2 endocrine nurses and they now say my TSH T4 and T3 are all within the range and that my fatigue brain malfunction have nothing to do with the Thyroid. I replied then why do I have suicidal thoughts so she advised me to see my GP urgently. I am now on anti depressants.

My present concern is doing the finger prick test because it withdraws only a small amount of blood- I wanted to use the phlebotomist at my GP's to take blood for me to send to Horizon but I feel they will not cooperate.

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The fingerprick is ok. Just take your time and relax. Read all the stuff that comes in the kit a couple of times before you start. I also lay everything out before I begin so that I know everything is there in order of use.

I think they give you hints on the leaflet but I always do it when I am warm - usually just out of bed. I have a drink of water, they tell you to soak your hands in warm water so I do that too. You can also run on the spot if you are fit or shake your hands about to get the blood moving.

It’s not difficult you just need to keep calm, first t8me I did it I was all of a flutter and even then it was ok. I do it by the bathroom sink so that I don’t drip blood on myself or the furniture, also although you do it towards the side of your finger, don’t go too close to the side or the blood will run down the side of your nail (well mine does) which is annoying when you are trying to get it into the tube.

And yes, sadly I don’t know what is taught about the thyroid these days, it is quite worrying

Good luck with it all..

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The Free T3 blood test is vital, the last one looks like one year ago... Nov. 2016. You need to ask your GP to do that test, telling him/her that it's the usable thyroid hormone in the body, whereas T4 has to be converted into T3 by the body. If he/she refuses, I think you will have to do a private thyroid test to see exactly where you are at. Either Blue Horizon or Medichecks. Be sure to get the test with TSH, Free T4, Free T3, vits B12 and D, folate, ferritin, two thyroid antibodies

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Hello Marigold

I mentioned T3 to my GP yesterday he does not think it is necessary to test it.

I will be using Blue Horizon in the next day or two using their Thyroid 11 test

I am not sure about finger prick test feel it will no take large enough blood sample.

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Unfortunately I had a problem with the finger prick, and had to go in search of a nurse.

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