My first post: 'Looking to help my wife with Hypothyroidism

Hi everbody!

Just found this community today- it's looks fantastic and very promising.

My wife has Hypothyroidism for a number of years now. About 3 years ago we paid to see a private Thyroid consultant in the UK. He confirmed (through a 2 hour in-person appointment) that my wife is Hypothyroid also most likely Hashimoto's. He prescribed meds which made a HUGE difference initially- say for the first 6 months.

Since then she plateaued and has now gone back to almost square one. She is VERY fed up with this. She has no energy, a lot of migraines, a LOT of muscle / joint pain- and feels that it is all getting slightly worse day by day. So it's my mission to get to the bottom of this and get her on the right track.

In all this time, she has never had any tests done- her diagnosis was (as stated above) purely be description of symptoms.

Her consultant has recently suggested two tests- one of them being urine and the other saliva. Sorry- don't have the name of the tests on me, but can find out later and edit this post.

I'm thinking she really foes need the full range of blood tests done- in order to set a benchmark?

Many thanks

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15 Replies

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  • IDN101 Well, it would be a good idea to find out if she does have Hashimoto's then she can take steps to try to reduce the antibodies.

    What thyroid meds is she currently on? Does she take any supplements? Does she take the thyroid meds correctly ie on an empty stomach, one hour before or two hours after eating, with water only, no coffee, tea, milk, etc. Does she take any other medication?

    There are urine and saliva tests done by Genova Diagnositics. The saliva test is usually for testing adrenals, and the urine test could be for testing thyroid to see what is actually getting into the cells over a 24 hour period. Maybe those are what your consultant means.

    What would be a really good idea, is to do a full thyroid panel which includes TSH, FT4, FT3, TPO and TG antibodies, and vitamin and mineral tests. We need optimal levels of vitamins and minerals for thyroid hormone to work properly. And we really need FT4 and FT3 to see whether we are converting T4 to T3 properly.

    I would suggest a Blue Horizon home test.

    This one can be done by fingerprick, collecting a small amount of blood (less than 1ml) in a tiny container bluehorizonmedicals.co.uk/T... It can be done be venous blood draw if you can get the blood drawn somewhere.

    They also do one that measurs reverse T3 which can be useful if someone is taking Levo but still symptomatic. Reverse T3 is where FT4 converts to reverse T3 instead of wholly converting to Free T3. This can't be done as a fingerprick test, it must be venous blood draw bluehorizonmedicals.co.uk/e...

    If you got those done before you next see the consultant, it will save money if he would have suggested further testing. You can also arrange the Genova tests through Thyroid UK which may be cheaper than doing them through the consultant, but you would need to know what he actually intended to test.

    Any thyroid tests should be done as early as possible in the morning, no later than 9am, fast overnight (water only) and leave off Levothyroixine for 24 hours, NDT or T3 for 12 hours.

    When you get any tests done, come back and post the results in a new thread for members to comment.

  • Many thanks for the fantastic reply. She is currently taking Adrenavive II (5 daily) and Metavive I (4 daily). The tests that the consultant has suggested are "Stress Adrenal Index" and "24 hour urine". We will look into getting the full thyroid panel done. Thanks once again for a VERY informative reply.

  • We're going to go ahead and order the "Thyroid Check Plus 11" package today. Thanks to all you guys on here- we feel we're starting to make progress. So much good information and friendly people to share it, here on ThyroidUK

  • Pop the results in a new thread when you get them, members will be happy to comment.

    The urine test is quite useful, I've done it a couple of times. Make sure you follow the instructions exactly for timing of collection, and only take one lot of meds in the 24 hours. If you're going to do it, I'm happy to help with timing etc so you get it right. Either send me a PM or put a post up and tag me (put @ directly in front of my name, no space, then when a list of suggested names come up click on mine and it will turn blue, I'll then get notification)

  • That's fantastic- thank you SO much for you help (and everybody else too 👍👍👍). I'm literally about to order the Plus 11 from Blue Horizon and the Adrenal Stress from Genova. Will start a new thread when we have some data.

  • Never been tested just treated by symptoms? Old school in a good way? hmmm, maybe...kinda... but... she really does need the basics done to see what is happening and very surprised they weren't done first :O

    TSH

    FT3

    FT4

    FOLATE

    FERRITIN

    B12

    VITAMIN D

    if GP or consultant wont do them then do what a lot of us do and get private blood tests. Blue horizon and Medichecks do these for £79 +, go to the Thyroid uk website you can find info on private tests and lots lots more.

    When you get results post them on here with the ranges and you will get help and advise from wise ones, and some of us who have a lot of learning still to do :) like me ;)

    And welcome

    Xxx linda

    Ah a wise one beat me too it :D How could I forget the anti bodies grrrrr

  • Many thanks Linda- very kind and useful reply

  • Testing is important when first diagnosed as our dose is usually increased until we have relief of all clinical symptoms. Usually it is a test every six to nine weeks. Thereafter it can be yearly or if we begin to have symptoms.

    It's not as easy as taking a particular dose and keeping to that despite symptoms reappearing. SeasideSusie has given good advice.

    These are clinical symptoms of hypothyroidism and if your wife has antibodies, she then has an Autoimmune Thyroid Disease called Hashimoto's but treatment is the same, except going gluten free reduces antibody attack.

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

  • Many thanks for the link 👍👍👍

  • Any idea what meds she is on? It doesn't seem like she'd be treated for hypo on the basis of symptoms alone as it would be impossible to distinguish hypo from half a dozen other conditions without the aid of blood tests. Unless she is on some kind of glandular support - ?

    She can't really get a baseline now if she's been on meds for six months unless she comes off the meds, but if she needs them that would be impractical. I'm really curious now about her treatment!

  • Many thanks. She is currently on Adrenavive II (5 daily) and Metavive I (4 daily). She used to be on Nutri Thyroid and Nutri Adrenal extra- until they ran out of stock a few months ago. She was doing pretty well on the NutriAdvanced meds- and not so well on these new ones.

  • It seems unclear if these products contain any hormone:

    healthunlocked.com/thyroidu...

    healthunlocked.com/thyroidu...

    Are these prescription products or otc?

  • Has the. Insultant told your GP that he has prescribed thyroid meds for your wife? If not then he should have and he should also have said to keep checking it. Your GP should do that for her so worth an ask. Then get a copy of the results and the ranges and post them for advice.

  • Just to say thank you for being supportive to your wife. Hypothyroidism is a difficult thing for any of us to understand, hitting us in different ways. Many of us are too ill to fight the system which gives us one pill and tells us to get on with it, so any support is SO valuable. I get mine from this lovely forum, but keep going for your wife. Thank you.

  • I can sympathise a lot. My wife has given up with the GP years ago. That's when we found out about Dr Peatfield. She had an in-person appointment 2 years ago. He started her on some meds- initial progress was VERY good- but she plateaued and is now take backward steps. She is still in periodic contact with Dr Peatfield- but it is time for us to be a lot more proactive ourselves in order to crack this.

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