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I'm new and would appreciate some advice

I have been hypo for 11 years now and have been attending my doctor since January as my thyroid is all over the place, one minute to low the next to high. At present I am off work as I am so exhausted, my latest test results are 14.3 and 1.15. I had been on 200mg levothyroxine but this was reduced to 150 as results were 28 and .08 . Retested and results were 16 and 11 so am now on 175 . Doctor says my results are okay but I feel awful. Have had loads of blood taken and all have come back within normal range except Vit D which is slightly on the low side. I have been told to take a supplement.I have never had my T3 done and doctor says there is no need. I have been reading other stories and some are talking about their adrenalin gland. Can anyone explain this tome? Any advice would be great.

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  • It would be easier for people to help you if you posted all your results - with ranges. What doctors think is 'okay', very often isn't!

    Adrenalin is made by the adrenals. But, far more important is cortisol, because that needs to be optimal - not too low and not too high - for your body to be able to use thyroid hormone. However, if you've been undiagnosed/under-treated for a long time, your adrenals are likely to be fatigued, and your cortisol production compromised.

    But, before you get to the point of investigating that, there are other things to be ruled out. For example, nutritional deficiencies. You say your vit D3 is low, so are you supplementing that? What are you taking, and how much?

    And, if your vit D is low, other nutrients are likely to be, too. Have you also had your vit B12, folate and ferritin tested? Doctors know very little about hormones or nutrition, so we have to learn as much as we can for ourselves, I'm afraid. And you've come to the right place for that! :)

  • Marggieann1 Hi and welcome to the forum.

    Can you please clarify which test relates to which result and give the reference ranges please.

    Can you please post the results (with reference ranges) of any tests you've had done. You say Vit D is on the low side, what exactly is your level? Suggestions can be made for supplementing if we have all the information.

    Have you ever had antibodies tested - Thyroid Peroxidase and Thyroglobulin? If your results are fluctuating it could be that you have high antibodies which means autoimmune thyroid disease (Hashimoto's) as levels do fluctuate with Hashi's.

    A struggling thyroid, poorly treated, can lead to adrenal problems but you'd need a 24 hour adrenal saliva test to see what your levels of cortisol and DHEA are to know if your adrenals are a problem. The NHS doesn't offer that, it is a private test to do at home.

    Your GP is wrong to say that testing FT3 is not needed. T3 is the active hormone that every cell in our bodies need and knowing FT3 level is most important, unfortunately doctors don't seem to know this so dismiss it and generally tend to dose purely by TSH regardless of how we feel.

  • I have just been told that folic acid, vitamin 12 , folic and ferritin are within the normal range. Have also had glucose level tested and it is within normal range. Doctor told me range for Vitamin D is 25- 170 - mine is 35. Not sure what this means. Have not had a print out but I am seeing the doctor again on Friday so will ask for a print out then. I haven't started taking Vitamin D yet. Nor prescribed by doctor just to get myself - 10mg per day and take all year.

  • Marggieann1 Always ask for a print out of your results, you are legally entitled to them but your surgery may make a small charge for printing. When you have them, make a new thread with them and members will comment.

    As for Vit D, it's best to get your own supplement as you'll get a better quality one than anything your GP would prescribe.

    The recommended level for Vit D is 100-150nmol/L and with your level at 35 (assuming the same units) then I'd suggest taking 10,000iu daily for a month then reduce to 5,000iu daily. Retest (privately if necessary through City Assays vitamindtest.org.uk/vitamin... ) in 4-5 months time to ensure you are within the recommended level.

    When taking D3 we also need it's important co-factors K2-MK7 and magnesium. Vit D aids absorption of calcium from food and K2 directs it to bones and teeth rather than arteries and soft tissues. D3 and K2 are fat soluble so need to be taken with the fattiest meal of the day. Different forms of magnesium can be seen here naturalnews.com/046401_magn... so you can see which would suit you best. Magnesium is calming so best taken in the evening.

  • I have just returned from my GP appointment - not very productive but I did manage to get a print out of my results. I asked if I could try the combination pill but she said as she did not know my T3 level she could not prescribe it. .

    She is suggesting I am suffering from depression as my thyroid level is within the normal range. I function better when my Free T4 is around the 20 to 21 and my TSH is 1 or under.

    These are my results

    Free T4 14.1 (range 9-24)

    TSH 1.15 (range 0.34 - 5.4)

    Vitamin D 25 -OH

  • Sorry hit the button to post before I had finished

    Vitamin D 35.0 range(25 - 170)

    T3 - Lab refused to do

    Full blood count Haemoglobin 133 (range 118 - 148)

    Cholesterol 5.5

    Vitamin B12 384 (range > 200)

    Folate 7.4 ( range > 2)

    Ferratin 58 (range 30 - 480)

    Glucose 4.1 ( 3.5 - 5.5)

    Everything is within the normal range except Vitamin D and I have been told to take between 800/1000 per day.

    Interested to see what everyone thinks of these and any advice would be great

  • Marggieann1 You added the extra information whilst I was replying.

    Vit D now 35 - continue supplementing and aim for 100-150nmol/L then go onto a maintenance dose.

    Ferritin is very low. This should be half way through it's range with an absolute minimum of 70 for thyroid hormone to work. However, that is a very large range, mine was 20-150 so I don't know if age comes into it.

    I have managed to raise my ferritin from a similar level simply by eating liver once a week, it is now at a very acceptable level. Or you could get Ferrous Fumarate (from Amazon) and take one tablet twice daily. Take each tablet with 1000mg Vit C to aid absorption and help prevent constipation. Take iron 4 hours away from Levo and other supplements and meds as it affects their absorption. Finish the pack (usually 84 tablets) then re-test.

    B12 is also low. Anything under 500 can cause neurological problems. The aim is very top of range (which is usually something like 750), even 900-1000. You could supplement with Solgar or Jarrows sublingual methylcobalamin lozenges 5000mcg, one daily and dissolve under the tongue so it goes directly into the bloodstream, don't chew or swallow as stomach acid destroys it. After 1-2 months you could reduce to 1000mcg daily as a maintenance dose.

    When taking B12 we also need a B Complex to balance the B vits. Thorne Basic B or Jarrows B Right are both recommended by members.

    Don't start all supplements at once. Start with one and give it a week or two and if no reaction then add in the second one, give those a week or two and if no reaction then add in the next one, etc. This way if there are any problems you will know what caused it.

  • Marggieann1 Are those the only results? What about the B12, ferritin and folate?

    Are you in the UK? I am unaware of a combination pill.

    When she said she did not know your FT3 so couldn't prescribe it, did you ask her to test it to see if T3 could help you?

    Did you ask for your antibodies to be tested because of the fact that your levels seem to fluctuate, as you say "thyroid is all over the place, one minute to low the next to high"?

    She suggested you are suffering from depression because it is a cop out.

    You already know where your levels need to be for you to function best, did you explain this to your GP and point out how low your FT4 is compared to where you feel best? Did you ask for an increase to get your levels back to where they were?

    The aim of a treated hypo patient is generally for TSH to be 1 or below or wherever it is needed for the FT4 and FT3 to be in the upper part of their respective reference ranges. With your FT4 at 14.1 in a range of 9-24 you're not even half way through the range.

    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 louise.roberts@thyroiduk.org.uk she will let you have a copy of the article which you can print out and show your GP.

    You are going to have to help yourself and fight your corner. If you are in the UK you can get your FT3 and antibodies tested privately with Blue Horizon or Medichecks if your GP won't do them.

    And you need all those vitamin and mineral results to see if there are any deficiencies that are causing problems.

    You haven't put your Vit D result in your post but that was covered previously so you know what to aim for.

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