I am new here and thought I would share my recent experiences. TSH was low 0.09 so Levo was reduced by 25 to 100 however,

a lot of my old symptoms returned, sore throat, allergies, wheezy, lethargy and fatigue, aching muscles, runny nose, sore feet and I felt a lot worse. I read a lot of the posts on here and decided to question my GP and ask for my test results. I explained my symptoms and how my diabetic daughter, who also has an underactive thyroid nearly died last year due to her platelets being so low that the iron did not even register and her GP didn't know how she was still standing. She had pain all over and couldn't even get in and out of the bath. Her feet were so painful she told me it was like walking on the bones and she thought she was dying and didn't care. After intensive iron treatment she has recovered but will be on iron for the rest of her life. My GP was extremely helpful and knowledgeable about thyroid problems and agreed to test for B12 folate, ferritin, vit D, a full blood count, liver function and antibodies. The first tests have come back the very next day and show very low vit D and I have been given a prescription, I am still awaiting the antibody results. I am still confused though as my TSH has dropped even more to 0.08 in spite of the reduction in levo. My GP wants me to return for another blood test after a few weeks of taking vit D as this is also a vital vitamin for the pituitary gland and lack of this vit can produce similar symptoms to underactive thyroid. I am hoping that we are at last getting somewhere but will have to wait and see.

10 Replies

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  • Hi Juneo66, welcome to the forum.

    If your doctor were very knowledgeable about thyroid, he would know that once you are on thyroid hormone replacement, the TSH is irrelevant - unless it goes high. The most important number is the FT3 and, although the NHS labs will rarely agree to test it, you should never reduce your dose without knowing what the level of the FT3 is. At the very least, he should be testing the FT4.

    It is perfectly possible to have a low TSH, but also a low FT4 and/or low FT3, in which case, lowering your dose will make you more hypo. And, it's perfectly possible to be a bad converter of T4 to T3. But nothing of that will show up if all he tests is the TSH, and by dosing by the TSH, he is just keeping you sick.

    Whilst it is very important to have optimal nutrients, they cannot replace optimal hormone levels. So, if your doctor will not test your FT4/FT3, I would strongly advise you to get them done privately. Have your antibodies been tested? It's very important to get those done, too, both TPO and Tg antibodies. :)

  • Thank you for your reply. She did say they test T3 and T4 every time and that these were normal but didn't actually say what they were. She has requested antibodies but we are still awaiting results. I strongly suspect they will be present as prior to being diagnosed I became allergic to everything, sneezed constantly, nose streamed, couldn't breathe and ended up requiring an inhaler. When first put on levo in 1999 I went up to dose of 200 and never felt better, all allergies and asthma disappeared. However, GP at that time decided my levels required the reduction of dose and over the years it has been halved. I was really hoping that I had at last found a GP who had some understanding of this condition.

  • Ask for a print-out of your results. If you live in the UK, it is your legal right to have a copy. 'Normal' is meaningless, it's just an opinion. And, her opinion isn't necessarily right. You need to know exactly what was tested and exactly what the results were.

    If you were on 200 mcg levo, and never felt any better, the odds are that you don't convert very well. So, continually reducing your dose is hardly going to help, is it. I very much doubt if you have found a GP who understands thyroid, none of them do. They just don't learn about it in med school in any detail. So, we have to take charge ourselves. And, the first step is getting copies of your results, and learning to understand them. :)

  • Hi June066

    Be aware GPs always say blood results are all NORMAL even though the lab may state that some results are either above or below range! NEVER ever trust a GP's interpretation of your results. Always request copies of all tests.

    There is an added problem whereby GPs and medical professionals generally say results are normal when in fact although they may be within range they tend to be close to lower side of normal... which is not really good. Unfortunately it is an obtuse mindset and can't see how we can change their shoddy attitude!

    Did you GP's daughter not noticed her platelet levels were dangerously low?? I do hope you are feeling better, both of you. However you need to keep an eye on your blood results and not trust any GP blindly. They don't have your problems and truly do not understand how poor health affects people.

    Furthermore they are very keen to put patients on antidepressants!!! Easier for them that trying resolving the root cause of any problem which would take more of their time... they forget that's what they are paid to do...

  • Juneo66 As well as the excellent advice from Greygoose, I would suggest you have a look at the important co-factors needed when taking D3

    vitamindcouncil.org/about-v...

    D3 aids absorption of calcium from food and K2-MK7 directs it to bones and teeth where it should go, rather than arteries and soft tissues where it can cause problems like calcification of arteries and kidney stones etc. Plus most of us are deficient in magnesium so supplementing with it is important.

    What was your Vit D level?

    What has your GP prescribed?

    Are you taking a loading dose to start?

    Many GPs fail to follow the treatment protocol and give a dose so low it can only fail to raise Vit D level.

    On this page you will see the Vit D Council's suggested levels. They are in ng/ml unit of measurement, multiply by 2.5 to get the UK unit of measurement nmol/L

    vitamindcouncil.org/about-v...

    They recommend a level of 40-60ng/ml which for the UK unit of measurement is 100-150nmol/L

    Then this page tells you how much to supplement to achieve a specific level when you know what your current level is, don't forget to multiply by 2.5

    vitamindcouncil.org/i-teste...

    As the treatment protocol can vary according to where you live, you can Google 'guidelines for prescribing vitamin D (area)' putting your area in and see if your GP is actually following it correctly.

  • Thank you. I forgot to ask what vit D level was to be honest but the tablets I have been given are Fultium-D 800 IU equivalent to 20 micrograms Vitamin D3

  • Juneo66 For your GP to prescribe D3 you must be in the severely deficient range, so I'm guessing under 20 or 25. That level needs a loading dose and he has given you a mainenance dose which comes after the loading dose. And even then 800iu daily is not enough to maintain a decent D3 level throughout the winter.

    What area are you in, I'll see if I can find the treatment guidelines for your area.

  • Stockton on Tees area

  • From Tees Guidelines

    medicines.necsu.nhs.uk/guid...

    scroll down to "Nutrition and blood" and the bottom link is "Vitamin D Guideline on Supplements for At Risk Groups (677 downloads)".

    Click on that link to open a pdf which shows on the left hand side of the page Hartlepool and Stockton on Tees Clinical Commissioning Group, and on the right hand side of the page South Tees Clinical Commissioning Group. They seem to be lumped together as it says in the heading:

    "Approved by Tees CCGs August 2015 - Review July 2017"

    Taking the Hartlepool and Stockton on Tees CCG information, go to page 2 and it says [I am only quoting Fultium, you can see the other brands on the pdf but they don't apply to you]

    Deficiency -

    Fultium 20,000iu - 2 capsules weekly for 7 weeks. Maintenance - 2-3 capsules per month.

    Fultium 3,200iu - 1 capsule daily for 12 weeks.

    Insufficiency -

    Fultium 800iu - 1 capsule daily

    *****

    Taking the South Tees CCG information to compare, they say on page 1:

    <30nmol/l - Deficiency

    Fultium D3 20,000 IU capsules

    See table overleaf for licensed doses [* my comment - this would be page 2] (Adjusted serum calcium should be checked 1 month after completing the loading regimen or after

    starting vitamin D supplementation in case primary hyperparathyroidism has been unmasked.250HD measurements should be made A MINIUMUM of 3 months after initiating maintenance therapy but maybe more prudent to wait until 6 months after to confirm that the target level has been achieved).

    Issue as an ACUTE prescription.

    30-50nmol/l - Insufficiency

    Fultium 20,000iu /800iu capsules

    Treatment is advised in patients with:

    fragility fracture; osteoporosis or high fracture risk symptoms suggestive of vitamin D deficiency; Increased risk of developing vitamin D deficiency; raised PTH; medication with antiepileptic drugs or oral glucocorticoids; conditions associated with malabsorption

    Page 2 as above seems to apply to this CCG as well.

    *****

    So your GP has given you the dose for Insufficiency. You need to know your result to see if he is treating appropriately. If you come into the deficiency category you need the loading doses.

    Ask your surgery for the result of the Vit D test and when you have this come back and tell us. Members can advise the appropriate amount of supplementation if you wish to do it yourself. But whatever you do, you will need K2-MK7 and magnesium as they are both important co-factors.

  • Thank you so much. I have rung the surgery and enquired and they cannot give me the answer as it has been filed and just says vit D result abnormal contact patient so I need to speak to GP who will be available on Wed between 12 and 1 so I will ask for a print out of all my results.

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