Cerebrovascular disease: Hi I have just received... - Thyroid UK

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Cerebrovascular disease

helen_m profile image
25 Replies

Hi

I have just received a letter from the hospital telling me I have cerebrovascular disease. I went for tests because I developed neuro symptoms last year. These started (basically one leg shakes and a bit of balance lost and co-ordination) just before I was put on a trial of T3. I take 100mcg of levothyroxine and 20 mcg of liothyronine (although slightly upped this by 5 mcg in last few weeks as it dipped a little and got quite tired again).

The hospital letter says consider taking statins and aspirin. I'm 47, pretty fit and healthy, do lots of exercise, eat well. I possibly drink over the recommended weekly limit for women, and my sodium levels are good, no high blood pressure. Not sure where this has come from, really worried they'll make me go on statins and take away my T3 :-( I have noticed a wee bit of angina recently - although I thought it was just chest tightness.

Anybody else in this position?

Thanks

Helen

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helen_m
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25 Replies
MaryF profile image
MaryF

Hi, do you have relatives past of present with any history of autoimmune disease, (including Thyroid Disease), heart attacks and strokes at a young age or in the case of women multiple miscarriages? Also perhaps a history of migraines.

Please come back to me if that rings any bells. MaryF

helen_m profile image
helen_m in reply to MaryF

My dad has Myasthenia gravis, plus heart issues - I think arrythmia. On my mum's side of the family, there are many women with endocrine disorders, including Hashimoto's but not my mum. Her dad, my maternal grandfather died young of a heart attack. My other grandfather died of a stroke - but not dreadfully young, around 70. No migraines, and my mum only had one miscarriage.

MaryF profile image
MaryF in reply to helen_m

Hi, I have Hughes Syndrome/APS, otherwise known as Antiphospholipid Syndrome and Sticky Blood. There are three blood tests you need to do in the link below, be sure to do all three, your GP can order them, but do them at the hospital as the samples taken are time sensitive! I administrate another forum on here - Sticky Blood-Hughes Syndrome Support. The trio of disease often written about by Professor Hughes himself is Hughes Syndrome/APS a Thyroid condition and Sjogrens Disease.

Many of our members have a Thyroid disease, we always recommend they use the TUK charity pages and this forum. So an awful lot of us are on both forums.

Be aware that some neurologists are very dismissive of this disease, dangerously so. On our forum we have a list of recommended specialists across the UK.

londonlupuscentre.co.uk/hug...

MaryF

helen_m profile image
helen_m in reply to MaryF

Thanks MaryF - I'll go to my own GP and see if he can shed some light and also ask about these blood tests

MaryF profile image
MaryF in reply to helen_m

Important you get them done, I am also a trustee of the relevant charity! MaryF

Diddums profile image
Diddums in reply to helen_m

I am also waiting for a genetic test (nobody in family have thyroid illness) may shed some light

shaws profile image
shawsAdministrator

Statins aren't recommended with hypothyroidism. Thankfully I see that MaryF has responded and I'd definitely take her advice.

It is surprising how many people are diagnosed wrongly and given medication for something they may not have. No-one diagnosed me with hypo and I had plenty of symptoms but was diagnosed with 'other' and given treatment.

helen_m profile image
helen_m in reply to shaws

Thanks Shaws, didn't know that about statins and hypothyroidism

shaws profile image
shawsAdministrator in reply to helen_m

This is the link. :)

Marz profile image
Marz in reply to shaws

No Link :-)

shaws profile image
shawsAdministrator in reply to Marz

Thanks :)

nhs.uk/conditions/statins/c...

Extract:

and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

SlowDragon profile image
SlowDragonAdministrator

High cholesterol is a symptom of being hypothyroid

Perhaps your levels are not optimal

If you post you most recent blood tests, including vitamin D, folate, ferritin and B12 members can advise

Do you have Hashimoto's? High thyroid antibodies

If so are you on gluten free diet?

helen_m profile image
helen_m in reply to SlowDragon

I haven't had a cholesterol test in a while.

Vitamin D was 136 nmol a few months ago

Folate is low but just above the bottom of the range - I haven't got exact number but it was around 4.0

B12 is around 645

I don't have a recent ferritin result. The last time I was over at about 120 - sorry don't have the correct measurements.

I do have hashimoto's with TPO antibodies of 450 (down from 1000) I have been fully gluten free for 2 years.

I had thought my thyroid blood tests were good, the endocrinologist was pleased with them and said I was stable - but they haven't and never have done free T3 (which I am getting tested myself), free T4 is low but not as low as it was. I need to get a printout of the recent blood test results.

Angel_of_the_North profile image
Angel_of_the_North in reply to helen_m

Well, if you re on T3 you'd expect rock bottom TSH and low free T4. Really the important test is free T3 which hasn't been done. You really, really need to get that tested - it's also apparently one of the main predictors of the outcome of heart problems

helen_m profile image
helen_m in reply to Angel_of_the_North

I've got a free T3 test from Medichecks but have been slow about doing it. Can you tell me if I should stop taking T3 before it please? Or do the usual and leave 24 hours between last dose and the test? I can't believe it's been sitting on the couch for two weeks!

Angel_of_the_North profile image
Angel_of_the_North in reply to helen_m

You need to get TSH, free T3 and Free T4 done together. Generally leave off levo for 24 hours and T3 for 12 hours.

helen_m profile image
helen_m in reply to Angel_of_the_North

I've had TSH and free T4 done recently, and now been discharged and told to come back in a year!

SAUK profile image
SAUK

Hi Helen

Thanks for your post. I saw other people commented on your thyroid, but can I ask more about the cerebrovascular disease diagnosis.

Did a neurologist diagnose you with this?

What tests did the hospital do to give you this diagnosis?

What recommendations do they have to address the neuro symptoms?

I have not experienced these myself, but have worked as a neuro physio for 10 years and hope that someone is looking into your neuro symptoms and not just focusing solely on a thyroid.

helen_m profile image
helen_m in reply to SAUK

Hi SAUK

Yes, a neurologist diagnosed me, after three MRIs. The most recent one was of the head with contrast displays. Apparently that showed up cerebrovascular disease, which he called a common condition. He suggested I think about taking aspirin and a statin to reduce the risk of further progression. His letter was a wee bit off-hand.

Thanks

Helen

SAUK profile image
SAUK in reply to helen_m

Ok. Thanks. Glad a neurologist has been investigating it.

Diddums profile image
Diddums

I have a shaky jumpy leg when tired and have developed balance issues.I also have a slight tremor in hand I had TB/Meningitis14 years ago and put condition down to that or underactive thyroid condition I have now.My co-ordination is not brilliant and am slow nut is better than my typing .......sorry! Not sure why it started underlining?I also have not got angina

But interesting to know what I am to be eventually diagnosed with!

Have seen a neurosurgeon who advised a CT scan.............seems all normal except bloods which indicted underactive thyroid and am trying to tackle this. like you I probably go over National alcohol limits (not by much) I take 75 mcg of Levo Am over 60,have always been ok (misdiagnosed 14 years ago) and like you I have no idea what happened. Lost Mum recently and son died 11 Years ago.........thought maybe grief? But vitamin blood test tomorrow may show something.........and can compare to private blood test test I am waiting results of

Sleepybunny profile image
Sleepybunny

Hi Helen,

I wondered if you had been checked for B12 deficiency which can lead to neuro symptoms.

Have you ever had homocysteine levels checked?

I normally post on Pernicious Anaemia Society forum on HU. Lots of B12 info on there.

B12 deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

B12 websites

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

B12 Deficiency Info

b12deficiency.info/

I hope you get the help you need from your doctors.

helen_m profile image
helen_m in reply to Sleepybunny

Hi sleepybunny

That's what I thought it was, first of all. I've had a "normal" B12 test, which shows middle of the range and it's increased a bit as I've taken b12 supplements. My folate is always low however. I'll try and get a homocysteine test though.

Thanks

Helen

Sleepybunny profile image
Sleepybunny in reply to helen_m

Hi again,

It's possible to have B12 deficiency symptoms with in range B12 result.

Do you know your actual B12 result?

Taking B12 supplements means results for homocysteine test may be affected .

b12deficiency.info/b12-test...

Might be worth posting results for B12, folate, ferritin and full blood count on Pernicious Anaemia Forum.

PA is an auto-immune disease and auto-imune diseases in family can increase the chances of developing one.

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

For more B12 info , have a look at PAS forum. There are quite a few on PAS forum who have both thyroid and b12 problems.

I am not medically trained.

helen_m profile image
helen_m in reply to Sleepybunny

I can't remember exact number or range but it was around 700.

Thanks, I am a member of a B12 facebook group and had thought the neuro symptoms might be B12 deficiency. I've only taken a few B12 tabs, perhaps I should stop now.

Many thanks

Helen

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