Hashimoto's, blood trest results, kidney stones... - Thyroid UK

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Hashimoto's, blood trest results, kidney stones and menopausal!

t3rcam profile image
9 Replies

Happy New Year everybody. I would very much appreciate some advice regarding my blood test results. I was diagnosed with hashimoto's nearly 12 years ago. I have never felt well taking Thyroxine. Had an adrenal issue about three years ago and after seeing Doc BDP started taking adrenal supplements and felt much better. Still not good whilst taking Thyroxine or liquid Eltroxin - I recently discovered that I actually feel better without T4. Through reading the advice and information on this site I realised that I could be vitamin deficient. After seeing four different doctors at my GP surgery I managed to get tested and obtained the following results -

Serum vitamin B12 499 ng/l Normal Range 120 - 160

Serum ferritin 110.8 ug/l " " 10.0 - 250.0

Serum folate 5.3 ug/l " " 3.0 - 20.0

Plasma Glucose level 4.9 mmol/L " " 3.7 - 5.6

Serum vitamin D 42 nmol/L G.R.I.

I was advised that these results were normal however after some debate the doctor agreed to prescribe Vitamin D - Fultium-D3 800IU. However, the patient information leaflet stated that they should not be taken if you have kidney stones - which I have for the second time. The first time I had lithotrypsy where they zap the stones, I actually wonder if my adrenal gland was zapped and consequently adrenal problems a few years later. I managed to speak to the doctor who prescribed the vit D and she suggested that I take one every second day until I could discuss this with the endo she had referred me too - first I knew about this! Unfortunately the endo I have been referred to is the same one I saw when my adrenals were kaput and she said I was............yes you've guessed it...........depressed - I wasn't! One good thing came out of it as I became more determined to feel better so this was when I discovered Doc BDP! I am not holding out much hope with this latest referral. Currently I am not taking any T4 and whilst I don't feel great or 'normal' I definitely feel better without T4. My last thyroid bloods were taken about three weeks after stopping liquid Eltroxin and are as follows -

Serum free T4 <5 pmol/L Normal Range 10 - 25

Serum TSH level 128.28 mU/L " " 0.35 - 3.30

The doc said she was surprised I was looking so well and clearly not totally floored by such a high TSH. I do have symptoms of hypothyroidism but the strangest thing is waking up at night and feeling absolutely lousy and unable to get back to sleep - is this something to do with adrenals again? I have tried both T3 and Armour in the past but I felt lousy / toxic - could it have been wrong timing because my adrenals were not optimal and try either again? If anybody has any advice re these blood test results and what to do to improve things I would very grateful................still determined to feel better!

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9 Replies

Hi T3rcam

I just wanted to reply although I don't have any answers, sorry. Are you still taking Levo?

I too supplement with Vitamin D3 (but would much prefer some sunshine!) first test was 40 nmol/L, 6 months later 51 nmol/L (50 just 'adequate') but feel better. (on drops not Fultium).

Although I was low my GP refused a prescription or a calcium test although I know I should have the latter. I believe VitD (and parathyroids) control calcium, but haven't seen anyone post the Kidney stone connection, thank you for making us aware. I believe Vit K2 helps calcium get to where it should be too, but again we're not docs here and everyone's different.

Is that the correct range for B12? That is a very high TSH and low FT4 - I would be guessing that your pituitary is really trying to tell your Thyroid to produce more hormone without success - or are you taking something like Motilium?

I really hope others can comment on this for you, & hope your Endo will investigate this properly, perhaps get FT3 tested too. Have you seen Dr BDP lately? Jane :D

t3rcam profile image
t3rcam in reply to

Hi Jane thank you so much for your reply. I stopped all forms of T 4 Nov/Dec ish. Oops sorry the normal range for B12 should read 200 - 700, thanks for pointing that out. No not taking Motilium - what is it? Do you know where I can get a calcium test done privately? The only meds I take are Adrenal Extra, Nutri Adrenal, Vitamin C and Nutrigest. I have 3 Brazil nuts at breakfast as I learned from this site that they are high in Selenium and Magnesium. I'm not convinced that the endo will do anything but I know a lot more this time round than I did before so I might even provide her with some new information! I haven't seen Doc P since last year and sadly he has stopped his clinics here in Scotland so I will write to him with a copy of my blood test results. He is very good, I have more faith in him than any other Doc I've seen!

Jackie profile image
Jackie

Hi If prescribed or taking vit D, it is always essential to have calcium tested ( blood test, the corrected calcium) and if out of range do not take D, also it needs repeat tests even more than the D which should be gradually increased 3 monthly until OK. If calcium out you must not take D, yes kidney stones ,gall stone etc and more importantly heart. If calcium in range it is fine.

Jackie

t3rcam profile image
t3rcam in reply to Jackie

Hi Jackie, thanks for getting back to me. What do you mean by the 'corrected calcium'? I am pretty sure that my GP surgery won't do the regular blood tests that you mention but I will go private if I have to, do you know who will test vitamin D and Calcium privately?

in reply to t3rcam

I would have thought it essential for your GP to do a calcium test with kidney stones? I got my Vit D tested by City assays NHS B'ham (spot test by post - £25) the main TUK site has links here

thyroiduk.org.uk/tuk/testin...

Although I'm not on T4/Levo or any thyroid meds isn't it inadvisable to stop taking medication altogether? I know it stays in the system a while but don't folks usually have to take it for life? Then again you do get ups and downs with Hashimotos. Jane :D

(ps some folks take Motilium for nausea.)

t3rcam profile image
t3rcam in reply to

Hi Jane, thanks for getting back to me. I will look into getting the calcium test done. None of the four GP's I spoke to were very interested in the vitamin & mineral side of things. Yeah it is inadvisable to stop taking the T4 but my dilemma is take it and feel more and more lousy/toxic the more I take or take none and function at an OK level. I can't help but think that I may still have an adrenal issue given that I can feel fine all day then wake up through the night feeling really lousy and unable to get back to sleep. I am going to become a first time grandmother in the next three weeks so I am desperate to feel well so that I can enjoy being a granny!

Jackie profile image
Jackie in reply to t3rcam

Hi There are several calcium tests done ( called bone profile) but it is only the one marked "corrected calcium" that matters.Regarding the tests, the cheapest bog standard ( as NHS ) is £25 through City Hospital DIY through TUK site , bloods very simple. if out, the GP should do the calcium. if not use Blue Horizon, through TUK site, bloods. You have a discount if quote TUK 10, very reasonable and well known Lab called TDL.Then GP should take notice. if D high and calcium THEN yoyu will need the GP to test calcium, D, and PTH ( parathyroid ) on the same day. This if high would show a problem It would mean a referral and more tests.You should also have U`s and E`s done regally at the GP`s for the kidney and also dip sticks for urine. Even annually would do. i have severe kidney and liver disease.

I hope this gives you the info you need.

Jackie

t3rcam profile image
t3rcam in reply to Jackie

Wow Jackie thank you so much for your detailed information. There is so much to take in I get a bit bamboozled with it all. Do you know from my original question if my other results are good enough i.e ferritin etc?

I hope your severe kidney and liver disease is managable it certainly can't be easy. Puts my wee problem into perspective really. I feel quite humbled that you have so much to cope with and still manage to help people like me. Look after you.

Jackie profile image
Jackie in reply to t3rcam

Hi The D is low adequate is above 50 for blog standard NHS test and if calcium OK then you would benefit from slowly going on vit D from GP if possible. Tests for D every 3 months with slow increases if needed but ONLY if calcium remains in range. Calcium must always be in range and can suddenly alter especially on vit D .Glucose although well in range is slightly high .the best tests is HbA1c but anyway I would try to eat the diabetes diet, better for thyroid any way. Not too much fruit, little sugar, brown grain bread , few potatoes, greens and other roots and sweet potatoes. It is quite common to have diabetes with thyroid disease if the latter is autoimmune, diabetes is.Thyroid tests terrible! You need Free T3 testing and with a high TSH probably need treatment with T3, it lowers the TSH amongst other things. T3 is started on 20mcg split am and pm and takes a month to start to work. you also need the T4 treating, they are so bad you must feel simply dreadful. If not seeing an endo and Gp no help I would ask for a referral to an endo but make sure they are good, do not rely on GP do all the research first.I take armour and T3 as I need my FT3 to be just a below normal. If you did not improve on the drugs I would guess you did not stay on them for long ago. All thyroid drugs should be increased slowly with frequent tests and increases. It normally takes at least a year to be stable and then the slightest thing effects tit.

I hope this is some help.It is vital to have ranges for all tests as, all Labs vary with ranges and assays.

Jackie

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