Update: 9 months into my hypo journey - starting to take control, advice please.

[Michelin]

Apologies for the long post!! After an initial post when I joined this forum I’ve just been taking in info and learning about others journeys and now feel able to start to control my own as not really getting anywhere, and think my understanding from being on here has improved my knowledge to enable me to move forward and challenge GP’s if necessary . I wonder if you very knowledgeable admins / fellow members may be able to give me some advice on my initial test results below from Oct 18 and let me know if you think the raised TPO level indicates Hashimoto disease as a cause of my hypothyroidism? My GPS have never discussed or suggested this but I’ve recently asked for online access to my test results so can now see my full journey.

For further info I had surgery a year before this started for a pleomorphic Adelina tumour in my left salivary gland and had a difficult time supporting my father with end stage lung cancer so had had stressful time, although thought I was coping fine, I realise in retrospect my body has now told me otherwise!!

I had had chronic vertigo rasinably controlled with meds after a terrible year with acute issues for 12 years that I was treated for and had many thorough investigations for initially by neuro dept before being discharged and told it was vertiginous migraine, before the tumour and periods of joint / muscle weakness sensitivity issues, so now after doing research think I may have had Hashimoto’s for a few years before becoming quite poorly. ( my mother has hypothyroidism and fibromyalgia too as well as many other AI issues)

I’m still suffering from episodes of heart racing in the night, feelings of adrenalin surges and weird anxiety feeling despite not being anxious generally and aching muscles and joints constantly and my vertigo is now back. I’ve been titrated up to 100mcg of and my latest results show TSH and T4 in optimal ranges (I think) but after telephone consult with GP last week to discuss ongoing symptoms she has suggested private testing for T3 as they won’t do it, with Medichecks, to see if conversion is an issue. I’m taking the following supplements to try to further aid conversion for the last 8 weeks: vit D with k2, selenium, magnesium glycinate and zinc. Which if any do I need to stop and how long before the blood draw, as I have my kit here and have asked for full thyroid and vitamin testing at offer price of £79.

I’m thinking of trying to go gluten free despite fact initial tests didn’t show this as an issue as from reading about Hashimoto it seems to help many. Do most people try to go diary free too or one thing at a time to identify their own triggers for inflammation as I suspect that is the cause of my ongoing symptoms?

Results;

11.10.2018

VITAMIN B12;FOLATE (SERUM);TSH (USE FOR TFT);FERRITIN;Liver function tests;Urea and electrolytes;FREE T4;Full blood count Report, Abnormal, Need to speak to doctor

Serum sodium level 139 mmol/L [133 - 146]

Serum alkaline phosphatase level 82 iu/L [30 - 130)

Serum alanine aminotransferase level 12 iu/L [7 - 40)

Serum potassium level 4.7 mmol/L [3.5 - 5.3]

Serum free T4 level 11.2 pmol/L [10 - 19.8]

Full blood count (424..)

Serum creatinine level 69 umol/L [44 - 97)

GFR using creatinine per 1.73 square metres 87 mL/min

Serum folate level 11.89 ng/ml [> 5.38]

Serum TSH level 25.48 miu/L [0.35 - 5.5]

Serum vitamin B12 level 380 ng/L [211 - 911)

Serum C reactive protein level < 4 mg/L [0 - 6]

Serum albumin level 41 g/L [35 - 55)

Serum total bilirubin level 7 umol/L [0 - 20]

Serum ferritin level 63.4 ng/ml [10 - 291]

Liver function tests Information

Neutrophil count 4.14 10^9/L [1.5 - 7.7]

Lymphocyte count 2.07 10^9/L [1.1 - 4.5]

Mean platelet volume 9.3 fL

Platelet distribution width 47 %

Basophil count 0.05 10^9/L [0 - 0.2]

Plateletcrit 0.2 10*9/L

Monocyte count - observation 0.31 10^9/L [0.1 - 0.9]

Eosinophil count - observation 0.1 10^9/L [0.02 - 0.5]

Haemoglobin concentration 133 g/L [120 - 156]

Haematocrit 0.403 [0.355 - 0.455)

Total white blood count 6.8 10^9/L [3.9 - 10.2]

Red blood cell count 4.2 10^12/L [3.9 - 5.2]

Red blood cell distribution width 13.4 % [11 - 16]

Platelet count - observation 256 10^9/L [150 - 370]

Mean cell volume 95.9 fL [80 - 99]

Mean cell haemoglobin level 31.6 pg [27 - 33.5]

19.10, 18 rechecked as thought TSH may be inaccurate but had increased so it was then that I was started on 50mcg of Levo, but no explanation of any potential underlying cause like Hashimoto disease.

Thyroid function test;THYROID PEROXIDASE ANTIBODY Report, Abnormal, No Further Action

Serum free T4 level 11.1 pmol/L [10 - 19.88)

Serum TSH level 37.25 miu/L [0.35 - 5.5)

Serum thyroid peroxidase antibody concentration 443 kU/L [0 - 60]

Most recent May 2019 didn’t check TPO

Thyroid function test Report, Normal, No Further Action

Serum TSH level 0.7 miu/L [0.35 - 5.5]

Serum free T4 level 18.4 pmol/L [10 - 19.8]

Huge thanks in advance. Michelle

[SeasideSusie Remembering]

Michelin

Your list of test/results is very hard to read and very hard on the eyes. Would you mind editing your post and simplifying your results, we just need Test name, result, range, like this

TSH: 2.5 (0.27-4.20)

How to edit a post:

support.healthunlocked.com/...

[Michelin in reply to SeasideSusie]

Have done, hope this is better, thanks! 🤞😀

[SlowDragon Administrator]

Recommend doing FULL Thyroid and vitamin testing privately.....unless you can persuade GP to test vitamin D, folate, ferritin and B12

GP sounds like she might be amenable

Getting vitamin levels retested BEFORE starting on any new supplements

In 2018 Your B12 was well under 500, this can cause symptoms for many with Hashimoto's

Likely B12 levels are lower now

Vertigo is common symptom of B12 deficiency

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

According to Izabella Wentz the Thyroid Pharmacist

approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly.

Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

healthcentral.com/article/t...

[Michelin in reply to SlowDragon]

Thank you! Didn’t realise vertigo was common symptom of Vit B12 deficiency, that’s never been mentioned in my very long struggle with it, approx 15 years now. At one stage it was so bad GP’s had to come out and give injections as I couldn’t move my head at all after an attack without extreme vomiting due to awful spinning and couldn’t walk straight at all for a week. Had MRI’s, vestibular testing, referrals to neuro specialist in London etc, initially at its acute stage it was a dreadful time. Thankfully that period lasted about 10months then settled to only occasional attacks.

I do follow your advice before my blood tests, and leave Levo until after and fast.

I have medicheck kit here already for full thyroid and vitamin testing, will pay surgery for private blood draw. Will see what results are and try going gluten free after if results are negative still. Will leave off my current supplements this week and do the blood draw next week.

[greygoose in reply to Michelin]

Doctors don't know about B12. I had terrible, terrible vertigo after a slipped disc op - which figures, because the anesthetic uses up your B12, and I reckon mine was already pretty low. Doctors sent me for all sorts of scans and tests, but found nothing, and no-one mentioned or tested for B12. It's tragic, really. It could all have been sorted out so easily.

[Nico101 in reply to greygoose]

May I ask, when you talk about stopping thyroid meds 24 hours before a test, would this include things like Metavive and Adrenavive? Is 24 hours enough? Does that also apply to prednisone before a cortisol test? Or would you recommend longer? Cheers.

[greygoose in reply to Nico101]

I'm afraid I don't know about those things, never having taken them. I suggest you post your own question, then those that do know will be able to answer.

[SeasideSusie Remembering in reply to Nico101]

Nico101

Last dose of LEVO is 24 hours before a thyroid blood test.

For NDT, T3 and Metavive - because Metavive a thyroid glandular - the last dose should be 8-12 hours before a thyroid test.

As for Adrenavive, this is an adrenal supplement and you would follow instructions that come with an adrenal test for this, and there would be instructions about prednisone too, you don't need to stop Adrenavive for a thyroid test, just take any supplements after the test on the day. If you are going to do an adrenal test, use Regenerus or Genova Diagnostics who test both cortisol and DHEA and have proper reference ranges, don't use Medichecks or Blue Horizon for adrenal tests.

It's important to stop Biotin (B7) or a B Complex containing Biotin 7 days before any blood test, including thyroid tests, because if biotin is used in the assay it can give false results.

[Nico101 in reply to SeasideSusie]

Thank you - again! So helpful. Actually, if you recall, I bought the wrong tests from Medichecks, but I sent them back and bought the Regenerus one, and another thyroid test from Medichecks. So pleased I didn't waste money on the wrong tests.

I'm getting hopelessly confused by stopping this and stopping that and the different timescales, so I just stopped all my B vits about a week ago, my progesterone cream over 2 weeks ago, and my Metavive/Adrenavive/prednisolone 2 days ago for testing - hopefully - tomorrow.

The cortisol test mentions steroids, but says ask the Dr if they can be stopped and just says they can affect the result. Hopefully, 3 days will be enough to address that.

I don't feel that great, for obvious reasons, but I need these tests done asap after so much faffing about.

I don't know exactly when my new thyroid tests will arrive from Medicheck, but once the cortisol/DHEA one has been done, would you say it would be safe to at least go back onto my Adrenavive and prednisone?

[SeasideSusie Remembering in reply to Nico101]

Nico101

If you stopped your Metavive - which is your thyroid treatment - then you going to get false lows with your FT4 and FT3. If you want accurate thyroid tests you follow the advice for time gaps given here.

You will have to read all the Regenerus information carefully, it explains about what to do for last doses when taking hormones/steroids/adrenal supplements and asks for the times of last doses so they can be taken into account. You will have to make sure you put all the information down.

but once the cortisol/DHEA one has been done, would you say it would be safe to at least go back onto my Adrenavive and prednisone?

Yes. Just take them after doing the thyroid test on the day.

[Nico101 in reply to SeasideSusie]

Ok. So wait until after the thyroid to go back on the adrenal meds. Sorry to be so pedantic, but I'm really scared about messing things up and having to pay out to do it all again, which I can't afford. This blood brain fog doesn't help in trying to get info to stick, either

[Nico101 in reply to SeasideSusie]

Ok, this still isn't sinking in - don't worry, once these damned tests are done, I'll be out of your hair! Don't I want my thyroid results to show how I am without meds? I will soon be trying to get an endo to prescribe something stronger - NDT or possibly T3, as I don't think the Metavive is enough now (or I would no longer have the symptoms of hypothyroid). Will the Metavive not make my tests look more normal, so the endo can fob me off?

When you reply, try imagining you're talking to a toddler - I may just get it then, lol.

[SeasideSusie Remembering in reply to Nico101]

Nico101

I don't really understand exactly what you want I'm afraid.

From what I understand you were diagnosed hypothyroid a few months ago and were prescribed Levo and titrated up to 100mcg.

You had these tests done in May 2019:

TSH : 0.7 [0.35 - 5.5]

Free T4: 18.4 [10 - 19.8]

What thyroid meds were you on when this test was done?

Are you actually taking Adrenavive? If so why? Have you already done an adrenal test which indicated you should take it?

Are you actually taking Metavive? If so is this in addition to your Levo? If so why?

Is our prednisolone prescribed?

What supplements do you normally take?

Are you taking them because you tested and had low nutrient levels?

If I can get this straight in my mind we might be able to get further.

[Nico101 in reply to SeasideSusie]

No, that's not me. I was diagnosed slightly hypo about 2 years ago and refused meds, went to Dr P, and he put me on Adrenavive and Metavive, which worked very well until a period of severe and sustained stress and I upped the meds with his approval - then Dr P disappeared and I've been in limbo since.

I had NHS blood tests for vitamins/minerals and a few other things last Thurday, but am also getting privately tested now for cortisol and dhea (saliva), and the Thyroid Plus test (blood).

I'm just getting confused now about stopping certain supplements, and my Adrenavive and Metavive and prednisone, before the tests, as there seems to be a lot of conflicting info out there. I rang Medichecks about when to stop the Metavive, etc., but they didn't know. The chap I spoke to says he'll ask and get back to me.

I'm a bit desperate to get it sorted, as I keep stopping and starting the meds and feel awful when I do. Hopefully, I'll get my head around it all and get the tests out of the way this week and get back to some normality... unless I need NDT and/or T3 - but that's a fight for another day. I just want to get through these tests, first.

[SeasideSusie Remembering in reply to Nico101]

Nico101

I have responded on your own thread here so we can keep Michelin's thread on topic

healthunlocked.com/thyroidu...

[SeasideSusie Remembering in reply to SeasideSusie]

OK, I got mixed up then, I now realise this isn't your thread. I'll take some time to look through your previous posts and get back later.

[Michelin in reply to greygoose]

It really is shocking, that a Vit deficiency that can be easily rectified is not explored! If Doctors experienced it themselves they’d soon become better at supporting patients with this disease to reach their optimal health. I know you’ll understand what it’s like then, I was working professionally in social care workforce development at the time it started, facilitating conferences, meetings etc and literally would vomit into a bin, ask people to bear with me and stay still for as long as I could and carry on when I possibly could as I was determined not to let it beat me but it was the worst thing I’ve ever experienced. I’ve not worked since last June, taken early retirement, as I just didn’t feel I could be the person I was anymore, my brain fog and sheer effort it took to do half as well as I wanted to just wasn’t sustainable as far as I was concerned.

The current vertigo flare up attacks are no where near as bad as that atm, although equally as unpredictable as they can come on in a split second, so I’m keen to do something proactive myself before it is, so this is really helpful to know.

Out of interest have you seen any of Martin Rutherfords seminars, he has Hashimoto himself and it’s been a welcome watch to hear doctors make the links we’ve all discovered from a functional medicine perspective. Lengthy but I found it worthwhile, currently going through others in his series about break through approaches and treatments. I’d be very interested in admins views.

youtu.be/REgrJOzw2ug(Not working as expected?)

Huge thanks again.

[greygoose in reply to Michelin]

They just haven't a clue! You would think that surgeons/anesthetists would know about the anesthetic/B12 link but they don't. One doctor I asked to test my B12 said 'what for? It's only a vitamin'! It wasn't so bad that I vomited, but I didn't dare leave the house. I stopped work for a month to have this op, and never went back. After a year, I found a part-time job nearer home - I couldn't possibly have spent two hours on public transport each way, every day, I was far too ill. The only consolation is, that whilst they were exploring my health problems which arose after the op, they found my Hashi's. Scant consolation.

No, I haven't watched any of those videos. I'll bear them in mind. Thank you for the link.

[Michelin in reply to greygoose]

Dreadful! We loose so much if ourselves in the journey to diagnosis and subsequent sub standard treatment. This disease is so slow and insidious in its development initially with separate issues that arise that are dealt with in isolation, that even we don’t make the links until far too late to advocate for ourselves until we are really ill. I now think even my recent tumour was related, as that particular type starts 12-14 years before it causes issues, the same time as the vertigo started!

That’s why the video seminar was so interesting and mind blowing, two Doctors practising in a functional holistic way, to truly get to route of symptoms. I only stumbled across them a couple of days ago. Let me know what you think when you’ve had time to watch. 👍

[greygoose in reply to Michelin]

I will.

[Romilly2 in reply to Michelin]

This was fascinating, Thankyou for sharing!

[notpink in reply to Michelin]

Thanks you so much for sharing, very useful.

[SlowDragon Administrator in reply to Michelin]

Signs and symptoms of B12 deficiency

b12deficiency.info/signs-an...

Extremely common to have low B12 with Hashimoto's

Folate and B12 work together. If folate and B12 are both low it's more likely

[Michelin in reply to SlowDragon]

Thanks again.

I’ve booked my private blood draw for Tues 11th June online this afternoon and am going to stop all supplements from today to give at least one week off of them all and will continue normal diet until afterwards too.

I do have many of the S/S’s on your linked list and the B12 result should be enlightening to say the least. At least I’ll feel I’ve been proactive and armed with results can negotiate next steps as currently I’m supposed to be just fine on Levo and put up with things, like many others, I don’t feel much different than I did before I started taking it last year. Here’s to positive steps and happier healthier times ahead!

[SlowDragon Administrator in reply to Michelin]

What supplements are you taking?

Generally we say stop any supplements with biotin in a week before any blood tests. That usually includes most vitamin B complex

If taking iron supplements and wanting to know base level, stop this a week before testing

Vitamin D, just stop day before

[Michelin in reply to SlowDragon]

I’ve been taking B12, selenium, magnesium glycinate, zinc and Vit D with K2. GP aware, her area of interest is functional medicine, which is helpful!