Any help would be appreciated

[cassie51]

I was diagnosed with Hypothyroidism about a year ago. I am on 50mcg Levothyroxine. Most of the time do not feel well. Have been reading posts and do not understand what T3 is. Never had anything explained to me. Any advice on what I should be asking the Doctor? Thankyou

[SeasideSusie Remembering]

cassie51 T3 is the active hormone which every cell in our bodies need. T4 is the pro hormone that converts to T3.

When full thyroid tests are done you would see TSH (thyroid stimulating hormone), free T4 and free T3. The FT3 result would show how well the T4 is converting to T3. If conversion is poor, synthetic T3 can be added to Levo (T4).

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

50mcg is a starter dose and after a year since diagnosis one would expect you to be on a higher dose by now. Do you have any current test results to share?

When having blood drawn for thyroid tests, always book the first appointment of the morning, fast overnight (water only), and leave off Levo for 24 hours. This gives the highest possible TSH which is what is needed when looking for an increase in dose or to avoid a reduction.

[Ruthi]

OK, simple explanation. You need T3, the active hormone, to keep your metabolism going. But the levothyroxine, is T4 (it has one extra iodine atom) and needs to be broken down by the body into T3. Most people do it very well, but a few have trouble. On 50mg levothyroxine it is more likely you just aren't being give enough.

The doctors test TSH - thyroid stimulationg hormone, which you produce when you need more hormone. So if your body doesn't have enough, your TSH will go up.

Ask the surgery for your test results and post them here, (including the figures in brackets after the actual number) and we will be able to comment and explain further.

[cassie51 in reply to Ruthi]

Thankyou for making that clearer. I will request the results and post them.

[cjrsquared]

Levothyroxine is t4, it has 4 iodine molecules in its make up and is a prohormone, an inactive hormone. The body then converts t4 to t3, the active hormone, by biochemically knocking an iodine molecule off, to form t3. It is t3 that every cell in the body uses for metabolism. It is a complicated biochemical process which has several stages which can influence how well individuals convert t4 to t3. It is low t3 levels that give the symptoms of hypothyroidism. Low levels of vit b 12, iron deficiency anaemia, low levels of selenium or a genetic mutation can inhibit this conversion. Therefore an individual may not be able to utilise t4, levothyroxine, to produce enough t3 to combat the symptoms of hypothyroidism. That is why if possible you need blood tests for ft4 and ft3 to see how well your body is converting. If your ft4 is high in range and your ft3 is below or low in range it suggests that you have a conversion problem. It is then helpful to have blood tests to check for iron deficiency anaemia and low vit b 12, as by improving these you may improve your conversion and reduce symptoms.

It is possible to be prescribed t3, liothyronine, but it is controversial and has become very expensive so many GPs won't prescribe it. It also causes debate amongst endocrinologists with some very pro it's use and others very dismissive.

Hope this helps, good luck with reading and learning more.

[cassie51 in reply to cjrsquared]

Thankyou for this reply. I had a blood test, which was the one that confirmed the Hypothyroidism, a year ago. Hopefully the Doctor will arrange another one soon. I just want to start feeling better.

[SeasideSusie Remembering in reply to cassie51]

cassie51 If you've only ever had one thyroid function test - the one that gave you your diagnosis of hypothyroidism, and no follow up, then your GP has been grossly negligent.

When started on Levo, we should have a follow up test 6-8 weeks later. That test tells your GP where you levels lie and whether an increase in Levo is necessary. It generally is when starting. So you should have had that follow up test after 6-8 weeks, an increase of 25mcg then another follow up test after another 6-8 weeks, another increase, another follow up test, etc, until you are optimally medicated and your symptoms abate.

Do not wait to hope that your GP will arrange a test. Just book one and if it's questioned then you tell them that you should have had one no later than 2 months after you started on Levo, that you have been left on your starter dose and that you are very unwell.

Always get a print out of your test results, you are legally entitled to them under the Data Protection Act although your surgery may make a small charge for printing. Make sure that the reference ranges (usually in brackets) are included. They should look something like this - eg

TSH: 3.2 (0.2-4.2)

FT4: 15 (12-22)

When you have your results, post them in that format for members to comment.

We need to learn about our condition because very few doctors really know much about it. Have a look around ThyroidUK's main website (this is their forum), learn as much as you can, and make sure that your doctor follows the correct protocol for testing and getting you on the right dose of Levo for you.

thyroiduk.org.uk/tuk/index....

[Rapunzel in reply to cassie51]

cassie51 you do not have to wait for your GP to test you. Often, even if a full thryoid panel is requested, if the TSH is within range no other tests are done by the lab, especially the one most useful to check -T3.

thyroiduk.org.uk has a number of pages about this under the left hand side legend 'about testing'. Your GP has left you suffering on a starting dose; I am assuming that you returned to your GP to advise that you still felt unwell. Your post suggests that your GP knows very little about thyroid conditions - as does my own GP.

cjrsquared has pointed out that some vitamins/minerals need to be at optimal levels for levothyroxine to work properly and you may need to investigate this.

Doubtless your head is spinning - you remain unwell but the nhs has just left you with a half life and expected you to live it - for too many people, this is the world of being hypothyroid. You do not have to put up with this and can feel better, but it is a slow and uphill battle.

[cassie51 in reply to Rapunzel]

Thankyou for your reply. I have Agoraphobia since losing my Husband. My Daughter was so worried about how I have been feeling she went to the Doctor on my behalf. He said I only test once a year, I will do this in March. He offered nothing else. Perhaps, as you say, through lack of knowledge perhaps. I suppose I will wait a little longer and then see what the results are, post them on here and hopefully get some feedback. Thankyou again. As a matter of interest when should the tablet be taken? Its just that I feel more unwell in the morning.

[Ruthi in reply to cassie51]

You should take your tablet first thing in the morning, just with water, and then wait an hour before eating or drinking. Or you can take it at bedtime, but no food or drink other than water for at least two hours before you take it. 50mg is really a starter dose so its not surprising you feel no better.

When you go for your blood test book the earliest appointment you can get in the morning. Don't eat or take your tablet until afterwards.

Can you see a different doctor at the surgery? Testing once a year is what they do once you are established at a therapeutic dose, not before.

Agoraphobia and anxiety are common symptoms of hypothyroidism, so you may well feel better once you are properly medicated. If not then you should really be referred for CBT, which is very effective in these situations.

[cassie51 in reply to Ruthi]

Thankyou for this information. I will try in the mornings. I am hoping that once I am on the correct dose I can begin to try to conquer the Agoraphobia. It is difficult trying to motivate yourself whilst feeling unwell.

[Ruthi in reply to Ruthi]

Yes it is! Not that doctors understand that!

Grief does horrid things to our minds. People imagine that you have a good cry and get on with things. Have you thought about talking to Cruse?

[cassie51 in reply to Ruthi]

Thankfully I have a big supportive Family who I talk things over with. Losing someone after 43 years marriage, and to such a good man, is hard. It is 5 years now but feels like yesterday. I hope this thyroid condition is managed to the point that I can feel a bit more normal. Thankyou

[shaws Administrator in reply to cassie51]

I am sorry you've lost your husband and after such a long time together it is very difficult for some. Being unwell yourself with unpleasant symptoms will have dented your confidence. Tick off the symptoms in the link below and you will be surprised how many there are and the fact that doctors/endos appear to not know any.

First your dose of 50mcg is so small, an introductory dose and should have been increased around every six to eight weeks by around 25mcg till you felt better. Those of us who felt awful on levothyroxine (me too) couldn't understand why. In fact I developed so many more awful symptoms than before diagnosis.

I know a doctor who tried to connect with the Endocrinology saying that we were not being given sufficient doses as before the tests/levothyroxine were introduced the 'normal' doses were between 200 and 400mcg of dessicated thyroid hormones. They refused to attend a Conference arrange by him to discuss the 'parlous' situation of many patients.

We can get well but it may mean sourcing our own but first. Change your doctor as his treatment of your hypo can lead to other more serious illnesses, which we do NOT want.

[cassie51 in reply to shaws]

Thankyou for your reply and your kindness.

[shaws Administrator in reply to cassie51]

Where do you live? What country?

[cassie51 in reply to shaws]

uk

[Sweetart in reply to Rapunzel]

I totally agree with your comment that we have been left with half a life,I have sometimes looked like a walking corpse after a total thyroidectomy may be I could join in the day of the dead celebrations in Mexico as a merraca as I rattle with all the pills I take,gotta laugh!😁or cry😂

[cassie51 in reply to Sweetart]

Awww thankyou for your comments, you made me smile x

[SlowDragon Administrator]

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...

Special offer at moment

thyroiduk.org.uk/medichecks

If you can afford it the one that also checks Thyroid & vitamins is the best

medichecks.com/thyroid-func...

Usual advice on ALL thyroid tests, 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

[cassie51 in reply to SlowDragon]

Thankyou, if the Doctor still refuses I shall look into the private test. Thankyou for the link.

[shaws Administrator in reply to cassie51]

If you are in the UK, your doctor is grossly negligent. Undermedicated can lead us to get other problems which we do not need or want.

We have to read and learn about hypothyroidism and its treatment if we are to find our way forward. I wonder if your doctor has a licence to practice medicine?

Tick off your clinical symptoms and I am sure you will have plenty. All of these are due to low thyroid hormones and our body's struggle to try to function.

[cassie51 in reply to shaws]

Thankyou Shaws, I am contacting my GP tomorrow.

[shaws Administrator]

The very first thing you have to do, is to make a new appointment for a new blood test. No good getting results of an old test.

The appointment has to be the very earliest possible, fasting (you can drink water) and allow 24 hour gap between your last dose and the test and take levo afterwards.

If your doctor asks why you want a blood test say you have been so unwell since you began treatment and you are now a member of Healthunlocked Thyroiduk who are the NHS Choices for information about dysfunction of the thyroid gland. You have been advised you should have had your bloods checked every six weeks until your TSH was 1 or lower with FT3 and FT4 towards the top of the range.

You want to have TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate too if you haven't had them. Vit B12 and Vit D are most important as they are pro-hormones and deficiences aren't good. (If he doesn't agree you can have a private test for those he wont do). We have recommended labs and they are home tests.

Get a print-out with the ranges and post for comments. It is really scandalous that people have to search internet for a very common autoimmune disease and it is poorly treated, nor do doctors understand the importance of optimum medication to return patient to good health.

That is why there are 50,000+ members on this forum, I think of all the forums on Healthunlocked, this must be top for queries/help/assistance.

[cassie51 in reply to shaws]

Thankyou so much for this information, You and other members have been really helpful. I do believe its lack of knowledge but I will contact my GP Tomorrow.

[cassie51]

Hi Shaws, Has a blood test and results came back last week. Received a letter saying GP wanted to see me. Phoned and said as I have Agoraphobia could the Doctor speak to me on the phone. He has been mine and my late Husband's GP for the past 14 years so knows me quite well and is aware of my Agoraphobia. I was told he is away until the 21st and no other Doctor can talk to me about these results. It is nearly the 21st and normally I wouldn't worry but I have been feeling so unwell and he obviously wanted to see me about something. Was this correct that no other Doctor could deal with this? Thankyou

[Jen15]

Hi Cassie, sorry to hear that you are having problems getting the help that you need for your hypothyroidism from your GP. It seems to be a common story.

You can always self refer and pay to see a thyroid consultant (known as an endocrinologist) privately. You don't have to ask your GP to refer you, you can just phone up and book the appointment yourself. Please message me privately and I can give the details of the the consultant that I saw , if that would be helpful?

Seeing an endocrinologist was the only way I made any real progress.

Very best wishes to you.