Confused and worried

Hello I wonder if anyone can help me.

Two years ago I found out I was UA. Normal ranges for us are TSH 0.27-4.00 T4 10-21

They said it was slightly raised and I was put on thyroxin 75mic 2 years ago. Last year something terrible happened in the family and I had a lot of stress. When I went for my usual test and my TSH was 39 no idea what T4 was. All I know is that I my TSH WAS 39 and I was in a bad place...very emotional very depressed and all over the place.

I was told to raise to 100 and I did but still didn't feel right for weeks. We had a holiday booked and I was a mess, so when we came home they raised me to 125.

Now gradually things got better and my TSH got right down to 0.1 and I was in a good place.

But that was short lived and I started feeling weird so I went for a test and although still in range TSH was 3.89.

I spoke to the doc who said yes it's clearly changing again how about we alternate the dose of 125 and then 150.

That's what I did and I felt good. Six weeks later...they have told me it's too much.

TSH was 0.10 and T4 was 22

So I reduced to 125 and six weeks later I am TSH 0.12 T4 19.7

This is my dilemma .... One doctor has told me to stay on 125 and another says.. I think you need to come down again to 100

I'm scared... I wasn't in a good place on 100 and I am going on holiday in four weeks.

What should I do?

17 Replies

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  • Your latest results are good, if you are feeling fine then don't reduce dose.

  • Ok thank you

  • Your doctor shouldn't be dosing by the TSH. The TSH is irrelevant once you are on thyroid hormone replacement. It doesn't matter how low it goes. And, just because it's low, doesn't mean you're over-medicated. Your FT4 isn't over-range, so if you feel good, refuse to reduce.

  • Ok thank you

  • You're welcome. :)

  • You should ask for thyroid antibodies to be tested - Thyroid Peroxidase (TPO) and Thyroglobulin (TG). I wonder if there is any antibody activity going on here.

  • They won't do anything .. I asked for t3 check and they said no and they said I don't need to be referred. To be honest I felt really good on alternate days of 125 and 150 but my t4 got out of range

  • You can do them privately with Blue Horizon or Medichecks, fingerprick test to do at home or venous blood draw, very reasonably priced. And if they've not been tested, go for thyroid plus vitamins and minerals, get the whole picture.

    bluehorizonmedicals.co.uk/t...

    medichecks.com/thyroid-health

  • Thank you I will

  • Hi seasideSusie. I took your advice and have received my medicheck pack which I need to do Tuesday. It's going to check TSH t4 ft3 as well as thyroid antibodies. I just wondered is there anything else I need checking ? These past few days this heavy hot head feeling that feels like a pressure is driving me mad but doc says that's my iron and once iron pills kick in it will go away. But I don't know 😞 He wants me to reduce yet again to 100 but I haven't I have stayed on 125.

  • If vitamins and minerals haven't been checked then they should. You say your doc says "that's my iron and once iron pills kick in it will go away." What have you had tested? Is your ferritin low? Do you have iron deficiency anaemia? What iron tablets have been prescribed?

    We always advise the following are tested

    Vit D

    B12

    Folate

    Ferritin

    So ask for those. They can be done as part of a thyroid bundle with Medichecks or Blue Horizon, but your GP may agree to do them.

    PS - don't forget when doing your Medichecks test that it should be easy early as possible in the morning, no later than 9am, fast overnight (but you can have water, you need to be well hydrated) and leave off levo for 24 hours.

  • Hi thanks for getting back to me. My iron was boarderline so I am on ferrous fumarate 210mg a day. I will look into them vitimins because my doc won't do them

  • Hi I did the medicheck could you look at it below for me ? 😊Please

  • Hello, I sent off for my medicheck and this was my result

    Thyroid Check Plus31 Aug 2017

    I note you are concerned about the reoccurance of your symptoms.

    Your thyroid function results indicate normal levels of all your hormones.

    Your antibodies are raised, which is concurrent with your hypothyroid condition, most likely caused by Hashimoto's Disease.

    You may wish to speak to your GP regarding the benefits you experienced on the higher dose.

    Dr Ajay Deshpande

    ENDOCRINOLOGYThyroid FunctionTHYROID STIMULATING HORMONE 0.325 mIU/L 0.27 - 4.20 FREE THYROXINE 18.4 pmol/L 12.00 - 22.00 TOTAL THYROXINE(T4) 93.7 nmol/L 59.00 - 154.00 FREE T3 4.06 pmol/L 3.10 - 6.80 THYROGLOBULIN ANTIBODY *221.000 IU/mL 0.00 - 115.00 THYROID PEROXIDASE ANTIBODIES*154 IU/mL 0.00 - 34.00

    Okay so it seems I am in range but I feel AWFUL. I don't feel like me at all and sad feelings are starting. I just had b12 vit D done today so waiting for results.. My iron was 29...? So I am on iron pills 210mg once a day. The doctor has told me to stay on 125 but the head pressure and sad feelings are terrible. Is this my iron or thyroid do you think? Ive been on iron about two weeks now

  • NIcolaRenae

    THYROID STIMULATING HORMONE 0.325 mIU/L 0.27 - 4.20

    FREE THYROXINE 18.4 pmol/L 12.00 - 22.00

    TOTAL THYROXINE(T4) 93.7 nmol/L 59.00 - 154.00

    FREE T3 4.06 pmol/L 3.10 - 6.80

    Well, your TSH is in a good place, most of us Hypos feel best when it is 1 or below.

    FT4 is 64% through it's range which is pretty good

    FT3 is 25% through it's range which is poor

    You don't appear to be converting T4 to T3 very well, as shown by your fairly good FT4 and low FT3. Also, your FT4:FT3 ratio is 4.5 : 1 whereas good conversion takes place when the ratio is less than 4:1 . You would benefit from the addition of some T3. You are very unlikely to get it on the NHS as they are trying to deprescribe it and many patients have had it taken away.

    **

    THYROGLOBULIN ANTIBODY *221.000 IU/mL 0.00 - 115.00

    THYROID PEROXIDASE ANTIBODIES*154 IU/mL 0.00 - 34.00

    Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it.

    The antibody attacks cause fluctuations in symptoms and test results. This is very likely why your TSH went up to 39, and responsible for other fluctuations in test results you've mentioned.

    You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. 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.

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

    Read and learn all you can about Hashi's, doctors tend to dismiss antibodies as not being important, or know nothing about them. We have to help ourselves.

    stopthethyroidmadness.com/h...

    stopthethyroidmadness.com/h...

    hypothyroidmom.com/hashimot...

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

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

    **

    Did you not have the thyroid/vitamin/mineral bundle with Medichecks? That would have been very useful and you'd have had all your results at the same time. It would probably only have been about £30/40 more than the test you had done.

    **

    What iron result is 29? Is this ferritin? What is the range? I can't comment until I know the range, they vary so you might be below range with one lab but in range with another.

    Have you also had an iron panel done, or full blooc count? Those would tell you if you have iron deficiency anaemia. These tests would be important if your ferritin result is below range.

    For the moment I can advise that you should take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

    **

    Are you having folate tested as well as B12, they work together.

    Post your other results when you have them and we can see if you have any deficiencies or low levels that need supplementing.

    All vitamins and minerals need to be optimal for thyroid hormone to work, so it's important to see all of the results and rectify any low levels.

  • Hell and thank you for taking the time to answer me. I appreciate your time. All I can tell you is they said my iron was boarder line and gave me pills 210mg twice a day and I feel awful. I don't know if my head us going to bust or I am going to cry.

  • I am going to be referred to a specialist and still waiting for b12 and vit d back

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