Newbie - first post! (lots of questions sorry!) - Thyroid UK

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Newbie - first post! (lots of questions sorry!)

JerseyK profile image
10 Replies

Hi - and thank you for letting me join. On the Friday before Christmas I received a call from my Gynae consultant's office to say that my thyroid blood results were back and they were writing to my GP.

I was really surprised as hadnt realised they were testing for this and asked her to email the results which were:

FreeT4 9.2

TSH 8.68

I checked my records online with my GP and less than a year ago they had also screened my TSH when it was 1.68 so in less than a year it has jumped up 7 points which is over 400%. No wonder I have been feeling pretty run down, fat and tired... i just thought it was getting older.

I cant get in to see my GP until end of January so have requested a telephone appointment for this Friday and was wondering if there were any questions I should be asking?

Having done some research I presume I should be asking for the autoimmune test as I also have ulcerated Colitis (although been in remission for a number of years and no longer on medication)

Is there any reason that I could have a spike in FSH that is not related to thyroid.

Should I be asking for FT3 to be checked too - and if so why. And any examples of how I can convince them to do this?

And finally (sorry for long post..) I have been having dizzy spells, hearing issues, vertigo, loss of feeling in my toes, heavy periods - hence why seeing gynae and I am being referred to cardiology as GP thinks I might have POTS. I had very low Vit D which is improving now but what I'm wondering is if all these are tied up with the thyroid?

Thanks so much for any info - with only 5mins on the telephone with my GP I want to make sure I get everything across rather then just be prescribed drugs and told to get on with it!

JerseyK

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10 Replies

What is your actual Vitamin D result ? Ask the practice for full information and add to post before seeing GP. If you have deficiency then you should have been prescribed Loading doses (280,000 - 300,000 IU) to be taken over several weeks before continuing on a daily maintenance dose which would be a minimum of 800 IU but could be 1000 - 2000 IU , depending on the individual patient.

Yes, ask for Thyroid Antibodies blood tests (TPO & Tg) And FT3, T3 & T4. Better still, ask for a referal to Endocrinologist. If that will take time then ask GP to do all tests .

Ask for tests to check your Adrenals function BEFORE you start on Levothyroxine 50mcg. (which is the 'starter' dose).

Ask GP to test other nutrients levels in particular Calcium, B12, Folate and Ferritin. You could have deficiencies in some of these also.

If you make sure your Adrenals are OK and get any nutrients deficiencies addressed, with adequate doses of presribed supplements, then your Levothyroxine will work better for you.

Always take your Levothyroxine tablets 30 to 60 minutes before food, on an empty stomach with water only. Never take any other medications or any supplements at the same time. Take supplements hours later and with or after food.

JerseyK profile image
JerseyK in reply to Mary-intussuception

Many thanks for your response - GP did do a full blood test including Adrenals so will check those results with her when I speak to her. My Vit D was 24 in July and has gone up to 69 by November once I had had the mega loading dose. I now take daily Vit D supplements so hopefully that one is now sorted!

SlowDragon profile image
SlowDragonAdministrator in reply to JerseyK

Aim for around 100nmol for vitamin D

Typical post with Low vitamins due to under medication

healthunlocked.com/thyroidu...

Low vitamins causing low TSH high FT4

healthunlocked.com/thyroidu...

Nexxt post reveals why

healthunlocked.com/thyroidu...

JerseyK profile image
JerseyK in reply to SlowDragon

Fantastic thanks for these links - really interesting and helpful

Mary-intussuception profile image
Mary-intussuception in reply to JerseyK

That's good. Your GP seems to know what she's doing. Check she's done the other nutrients mentioned though. And ask for a copy (print out) of all your test results with 'normal' reference ranges in brackets. Add on here if you want further comment. Sometimes labs report "normal" if within range but if, for example, Folate (B9) came back below range - and B12 came back within, but in lower half of, range then I would be asking for testing for Pernicious Anemia.

Your Vit D was very low. It's possible your others are also. You're not buying the Vit D supplements are you? They should be on prescription.

I don't know if you pay for your prescriptions (no one does where I am - Wales) but you are now entitled to all medicines free due to having Hypothyroidism (and being dependant on Levothyroxine for life). Ask your GP for the application form for the exemption.

I wonder if your GP will refer you to an Endocrinologist or treat you herself?

Once you know that your Adrenals are OK you should start on 50mcg Levothyroxine. Then have follow - up bloods in several weeks time and increase to 75mcg and so on. Increasing by 25mcg following next retest until you are stable (very low TSH) and symptoms improved.

My Endocrinologist said that my target therapeutic level of TSH is maximum 2. However I have read on here of the opinion that maximum of one is ideal.

Getting any nutrients deficiencies correctly treated will help.

SlowDragon profile image
SlowDragonAdministrator

Vertigo and dizziness is very likely low B12, extremely common when hypothyroid, especially if you have autoimmune thyroid disease also I called Hashimoto's

Hashimoto's is diagnosed by high thyroid antibodies so essential to test these

Low vitamin D, folate, B12 and ferritin are all very common, as are gut issues.

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Good levels of vitamins are essential for good thyroid function

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

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

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

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

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

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

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

Vitamindtest.org.uk - £28 postal kit

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 money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

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

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

JerseyK profile image
JerseyK in reply to SlowDragon

Thanks so much for all this really useful information. Definitely want to check if there is an autoimmune link and in fact have Hashimoto - so will ask for that to be tested and see what transpires!

thanks again

teasel90 profile image
teasel90 in reply to SlowDragon

Thanks SlowDragon, I have just been googling dizziness as I have been suffering it for the last 48hrs. Doesn't say anywhere on NHS sites about low vit B12, so having read the above response from your goodself will now get back to taking supplements and see if that makes a difference.

SlowDragon profile image
SlowDragonAdministrator in reply to teasel90

Low B12 is even more under diagnosed that thyroid!

b12deficiency.info/signs-an...

Also there was post today about high homocysteine and low B12 in dogs

healthunlocked.com/thyroidu...

Mary-intussuception profile image
Mary-intussuception in reply to teasel90

Teasel, hope you don't mind me mentioning (please forgive me if you do) but will you be seeing GP anyway - maybe have some blood tests?

Just in case it is something you need diagnosed? Say, for example, could it be low sodium?

What if it is B12 deficiency? Don't you need testing for Pernicious Anemia before you start supplementing?

Just some thoughts. Hope OK with you to mention. Sorry if not.

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