Hashimoto’s or Graves’ symptoms or…? Help to clarify please.

[Anna1812]

Hi everybody! I’m new here. Would be very grateful for your advice.

I was diagnosed with Hashimoto’s 17 years ago. It was in different country not in the UK. I have never been on medication as I was told if my T4 level is ok I don’t need any pills. I’m now in UK for about 5 years. I’ve never seen endocrinologist here. Struggling with my health during all 5 years. Only last week my (new) GP mentioned that he would probably give me referral to endo in future. I’m currently waiting for 2 weeks emergency appointment with Head and Neck specialist.

My symptoms are tiredness, fatigue, loosing weight, dizziness, vertigo, neck, shoulder tension, low blood pressure, low blood sugar, pain in throat, swallowing difficulty, heaviness in my back head, stomach problem like bloating, gas, upset stomach. I’m 44 but feel like I’m 80 at least. I was diagnosed with Vestibular Migraine few months ago started to take metaprolol, but after few weeks (I’ve changed climate zone) I’ve started to be so poorly, can’t even walk properly since. Doing some vestibular rehab exercises now. My question is could my symptoms be Hashimoto’s symptoms? Does vestibular system depend on thyroid hormones? I’m not even sure now do I have Hashimoto’s or Graves’ if you could say if from my test results? I’ve read here about gluten-free diet, should I try it now? Or should I wait until I see endo? I’m on dairy free diet now but still feeling not good.

My blood test results 02 May:

IgAtTG <1.0 ( normal <5.0)

Serum THS 0,33 (0,55-4,78)

Serum free T4 14,3 (11.5-22,7)

Haemoglobin A1c 34

Full blood count 6,94 (4,00-11,0)

Serum vitamin B12 570 (211-911)

Serum ferritin 62 (10-291)

GFR ( MDRD) 84

Serum creatinine 66 (45-84)

Serum sodium 140 (133-146)

Serum potassium 4,5 (3,5-5,3)

Serum urea 5,6 (2,5-7,8)

Serum calcium 2,51 (2,17-2,56)

Adjusted calcium 2,39 (2,17-2,56)

Serum albumin 46 (35-50).

Total alkaline phosphatase 53 (30-130)

Serum total protein 77 (60-80)

Serum total bilirubin 21 (10-49)

Serum ALT 12. (10-49)

Serum C reactive protein <4. (<10)

Results 29 May:

Serum TSH 0,16 (0,55-4,78).

Serum free T4 15,4 (11,5-22,7)

Serum free T3 5,5 (3,5-6,5)

GFR (MDRD) >90.

Serum creatinine 59 45-84)

Serum sodium 139 (133-146)

Serum potassium 4,5 (3,5-5,3)

Serum urea 4,2 (2,5-7,8)

Serum albumin 45 (35-50).

Total alkaline phosphatase 48 (30-130)

Serum total protein 74 (60-80)

Serum total bilirubin 12 (10-49)

Serum ALT 13 (10-49)

Sorry for a long post. I just thought it would be better to give more information.

Thank you for any help and support!

[tattybogle]

Were thyroid antibodies ever tested ? TPOab / TGab

Was your TSH previously higher than this ?

[Anna1812 in reply to tattybogle]

Hi tattybogle, thanks for your reply.

ATPO tested in 2013 twice : 854. (<34) and later that year 636 (<34)

ATG in 2013 >4000 (<115)

TSH in February 2024 was 0,69 (0,27-4,2)

[tattybogle in reply to Anna1812]

What time of day were these 3 TSH tests taken ?

Feb ........... 0.69 [0.27-4.2]

2nd May 0.33 [0.55 -4.78]

29th May 0.16 [0.55 -4.78]

they appear to be falling , but it may be just due to time of day (TSH has a circadian rhythm, it highest early am . falling to lowest around 1-3pm then rising again)

TPOab 800/ 600..... at these high levels definitely confirm autoimmune thyroid disease of some sort going on , but it's important to note that a lot of Graves patients (about 80%) will also have positive TPOab (but usually at rather lower levels than pure hashimoto's patients have) .... So your TPOab is pretty high, pointing to Hashimoto's , but this does not rule out Graves)

The antibody test needed to confirm graves is TRab (Thyroid Stimulating Hormone Receptor antibodies)

or TSI (Thyroid Stimulating Immunoglobulins)

this usually has to be ordered by Endo . GP don't usually do it. (you can get it done privately but it's about £100) but it wouldn't usually be done unless fT4 and /or fT3 were over range .. which yours are not.

So your current result are classed as 'subclinical HYPERthyroid'...meaning TSH is below range , but T4 and T3 are within range. (unfortunately i don't enough to know enough about sub-clinical hyper to say anything very helpful)

This helps explain which antibodies are involved in causing various types of autoimmune thyroid disease : thyroidpatients.ca/2020/04/... the-spectrum-of-thyroid-autoimmunity/

damn it .. my laptop is playing up making typing difficult ... i may come back to later (or not at all , if it die's completely lol).

[Anna1812 in reply to tattybogle]

Thank you again for your time.

What time of day were these 3 TSH tests taken ?

Feb ........... 0.69 [0.27-4.2] morning 9.30

2nd May 0.33 [0.55 -4.78] morning 9.15

29th May 0.16 [0.55 -4.78] afternoon 14.15

Do you think I need to see endo earlier than later and it’s better do not wait NHS one and go private?

Do my results mean I need any medication right now?

And I have ordered advanced thyroid test already. Just wondering do I have to do it now or closer to the day I see endo.

[tattybogle in reply to Anna1812]

my screen is bouncing around so i can't see your results or think obout it properly . need ofr any thyroid nedication is not obvious at the moment , not while T4/ T3 are in range.

Tagging PurpleNails or RedApple o helvella SlowDragon greygoose in case they can help .... someone on here recently mentioned vestibular migraine but i can't remmber who it was .

[greygoose in reply to Anna1812]

ATPO tested in 2013 twice : 854. (<34) and later that year 636 (<34)

So, these tests are both positive, and Hashi's doesn't go away, so yes, you still have Hashi's.

As to symptoms, you don't have Hashi's symptoms, or Graves' symptoms, you have hypo symptoms or hyper symptoms, because the symptoms would be the same whatever the cause of your hypo/hyper. However, you should be aware that a lot of symptoms can be both hypo and hyper. Which is why we need blood tests to back them up.

What time of day were these 3 TSH tests taken ?

Feb ........... 0.69 [0.27-4.2] morning

2nd May 0.33 [0.55 -4.78] morning

29th May 0.16 [0.55 -4.78] afternoon

Not helpful, I'm afraid. We need to know the exact time because a TSH at 9 am would not be the same as a TSH at 11.45. And, if they aren't done at the same time, every time, you cannot compare them.

Do you think I need to see endo earlier than later and it’s better do not wait NHS one and go private?

I don't think there's much point in seeing an endo at all. There's nothing he can diagnose you with according to those results - and sub-clinical/border-line hyper is not a diagnosis. It doesn't even mean anything given that hyper means having very, very high levels of FT4/3, and yours are only around mid-range, with suppressed TSH, and yours is not suppressed, just low. He could diagnose you with Hashi's - which you already know about - but there's nothing else to see. And doubtful he's going to be the least interested in your symptoms.

Do my results mean I need any medication right now?

What would you like medication for? You don't need thyroid hormone replacement because your FT3/4 are not low at the moment. And you certainly don't want anti-thyroid medication because that would send you very hypo very quickly. And there isn't any medication for the auto-immune aspect. So, no, I don't think you need medication right now. I think seeing a private endo would be a waste of money, and seeing an NHS endo would be a waste of everybody's time, because there's nothing they can do for you.

On the other hand, there are things you can do for yourself in the meantime. Yes, try a gluten-free diet, but ask to be tested for Coeliac disease first - your GP can do that. You can you're on a dairy-free diet now, why did you do that? Do you have problems with dairy? Has it helped at all?

And, get vit D, and folate. Your B12 is fine but your ferritin is low and could be causing some of your symptoms. Ask for cortisol to be tested, as well.

[Anna1812 in reply to greygoose]

Hi Greygoose, thank you for information and your advice.

I’ve done Coeliac disease test before and it was negative. So probably try gluten-free diet.

I’m on diary free diet now because of Vestibular Migraine, one of the vestibular specialist said I should eliminate some food such as dairy, processed food, caffeine, nuts, chocolate…

What dose of vitamin D? Should it be with K2? Is folate the same as folic acid? For my low ferritin what supplements should I use?

Thank you one more time! So glad I wrote a post here.

[greygoose in reply to Anna1812]

Vit D is not something I understand very well, so I would suggest you write a new post asking just about that.

Folic acid is synthetic folate, so not as well absorbed. We always recommend people take methylfolate.

But, just taking one B vit in isolation won't help you very much because they all work together and need to be kept balanced. Therefore we recomment taking a B complex that contains methylfolate and methylcobalamine (B12). It won't hurt your B12 to be a little higher.

For your ferritin it's a little more complicated. It's not a good idea to take iron supplements without knowing what your serum iron level is. Because even though the ferritin is low, the serum iron could be high, and iron supplements would just make it higher. So, best to get that tested first. If it is high, then increasing iron-rich food is recommended.

[Anna1812 in reply to greygoose]

Thank you.

February 2024 Cortisol 9am 315 (166-507)

Do you think I should check it again? Some of my symptoms the same but some new since February.

[greygoose in reply to Anna1812]

I would leave it a while to get cortisol rechecked. It won't change much in a short time and it's not that low.

[SlowDragon Administrator in reply to Anna1812]

Have you seen any improvements on dairy free diet yet

Give it at least 6 months

Definitely worth trying gluten free as well

when did you last test vitamin D

Are you currently taking any vitamin D

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[Anna1812 in reply to SlowDragon]

Hi SlowDragon, thank you for your reply.

I’ve tested vit D in May 2023 it was 33 (50-200) then after taking vit D in February 2024 it was 185 (50-200)

I reduced vit D supplement recently. Just having 4 sprays of Better You D+K2 every second day usually.

As for magnesium. I get used to take magnesium 400mg, zinc 25 mg, selenium 200mg and Omega supplements during 1 month period every autumn and spring. I believed that supposed to support my thyroid. I didn’t do one month course this spring because I wasn’t feel good. Now I’m thinking probably not talking then was part of the reason I felt bad?

Anyway did you hear about benefits of these supplements? If yes then how often or how long should you take them?

I’m on dairy free diet more than 2 months already. Can’t see much improvements in stomach or general health. Going to start gluten-free diet soon.

[birkie]

Hi Anna1812❤️

I was diagnosed with subclinical HYPERthyroidism in 2014 but like yourself I felt very ill my gp was told to monitor my thyroid levels [in the endo report [ I never saw this report until I requested my medical records in 2020] gp never monitored my thyroid levels, and I just went downhill, lost weight had tremors in my hands were sweating profusely, but gp said it was menopausal, I collapsed several times and were taken to the surgery where another gp diagnosed the true condition...graves disease , I then learned that graves is an auto immune condition and your antibodies attack your thyroid making it go overactive [in graves] but this as to be caught by bloods ,and attacks or flare up as I came to call them can be hard to detect in the beginning of graves , so hence the patient should have at least 3 consecutive blood tests done to monitor the levels of T3, T4, TSH ..unfortunately many GPS don't do this and if they see what they consider to be normal thyroid hormone bloods they will just say " everything is normal " not considering the bloods can go out of range due to the antibodies attacking the thyroid 🤦‍♂️

[Anna1812 in reply to birkie]

Hi birkie, thank you for your story and your support.

Any tips what helps you to cope when you’re low?