Newbie Thyroid Questions

[dococ6]

Hello,

I wondered if anyone may please be able to give me some advice/tips (sorry this may be a long intro post)... I'm 34 male and 6ft.

Recently, I went to the Dr's with:

- Cramp in hands/feet (in feet especially at night, but also tight muscles after exercise… and in hands, such as lifting the kettle/gardening/hoovering can cause onset cramping of fingers)… Temperature seems to affect this, worse in cold weather

- Seem to have low energy/fatigue – wake up tired (even after 12hrs sometimes), also fall asleep during the afternoon sometimes

- Average resting HR of 50bpm (according to wrist Sports monitor), this drops to 39-45 when asleep... I'm not overly fit, I walk to exercise and get out of breath on a slight incline or playing light sports etc. (if I try to up the pace, I tend to have headaches, zig zag flashes in my vision and feel more unwell... I also feel like the air is 'thicker' which leads to coughing)

- I get dizzy & lightheaded when I stand up after laying down or squatting

- Mental fog and seem to be procrastinating on everything at the moment

(I also have excessive hair loss at the moment, but didn't mention this).

The first Dr I saw ordered these tests (I don't have numbers, the receptionist said she didn’t understand them so I’d have to see the Dr):

- FBC (Normal)

- Calcium (Normal)

- CRP, ESR (Normal)

- H2AB1 (Normal)

- Vit D (Normal)

- Ferritin / Iron (Normal)

- Lipid Markers (showed high cholesterol)

- Thyroid (Test got missed off the blood sample / so no results)

The first Dr told me that the Heart Rate was just a sign of a healthy fit person. So, I went back to see the second Dr, who said all my tests looked normal... I mentioned that the Thyroid test had been missed off and was told "Well you don't have symptoms of a Thyroid problem anyway" - but when I went through the heart rate issues, I was told to book in for an ECG… As for the higher cholesterol, I was told to eat well and have it re-checked when I’m 40 (although I do already eat a pretty clean diet), so don't understand how it was raised.

I had the ECG (I get white coat syndrome), so basically it didn't show the slow HR but did show Sinus Arrhythmia and was told to go back and see the Dr who may do a 24Hr test).

I read on the internet that basal body temperature may also be indicative of thyroid problems, this morning first thing mine measured (96.5F), apparently the ‘normal’ is 98.6F.

A bit of background… My grandfather was Hypothyroid. My mother and sibling both have autoimmune arthritis and father has type 2 diabetes and heart failure.

I previously had some blood tests done privately when I was abroad in 2013, when I had similar symptoms (these were taken in the afternoon after lunch… I did not know about the timing then):

Vitamin D (25 OH) 19.46 ng/ml (20.0-60.0) // Treated with Vit D supplementation

Iron 38.9 ug/dl (59.0-158.0) Ferrozine // Treated with Iron supplementation

Total Cholesterol 248.4 mg/dl (60.0-200.0) Enzymatic -Colorimetric

Testosterone Total 4.52 ng/dl (2.84-8.0)

T3 (Triiodothyronine) 1.52 nmol/l (1.30-3.10)

T4 (Thyroxine) 63.48 nmol/l (66.0 - 181.0)

TSH 3.15 ulU/ml (0.270-4.20)

I’m due to see another Dr tomorrow morning to review the ECG issue and try to get to the bottom of the other issues, do you have any thoughts regarding what to discuss… Do you think the Thyroid could be a likely cause of these issues?

Thank you in advance for your help

[Nanaedake]

You need to be tested for thyroid antibodies considering your family history. Ask for TPO, TbAg to be tested as well as TSH, FT4 and FT3. You need them all done together to rule out thyroid disease. The fact that your iron and vitamin D was below range previously could indicate autoimmune thyroid condition. This means your TSH could fluctuate at any given point when tested but the thyroid antibodies tests would demonstrate whether you have latent autoimmune thyroid condition.

You do not need to wait for your doctor to interpret your results to get the results if you don't want to. You can access them online. Ask the receptionist to organise a password to register online. It's your right.

Make sure you request enhanced access to view your blood test results. You may need to provide ID or get your doctor or nurse to sign a form but once set up you can always view your results in future. If this is going to scare you, you might prefer a print out of results which your receptionist can organise but you might get charged a small amount for it.

[dococ6 in reply to Nanaedake]

Thank you for your reply Nanaedake... I will try and get those tests done and put an update on here after.

I called the surgery to ask about the online access - apparently, they only have it for the appointment system currently and are working on patients being able to view their blood results in the future... I will register in the hope it's soon In the meantime, I will ask if they can print out the results for me.

Thank you for your advice

[Nanaedake in reply to dococ6]

The receptionist is incorrect. Ask to speak to the practice manager. See the exerpt below from NHS England and the website. Your surgery has had 2 years to get their act together, don't let them off the hook!

nhs.uk/NHSEngland/thenhs/re...

"From April 2015 all GPs should give their patients online access to summary information in their records. This is part of the drive to provide more GP online services to patients. It should give you more control of your health and wellbeing, especially if you are managing a condition that needs regular monitoring and frequent prescriptions."

[dococ6 in reply to Nanaedake]

Thank you Nanaedake, very interesting to know

[Mary-intussuception]

Your T4 was LOW in 2013 - below range. So surely this was a Hypothyroid result back then wasn't it?

If you are still taking the Vitamin D supplements since 2013 then this may explain your GP saying 'normal'. However it is best if you get full info on tests ie figures , ranges in brackets, comments and date of tests. Put them on here for comment. You could ask receptionist for a print out.

The blood tests you need to ask for are Thyroid Antibodies (TPO and Tg) also B12 & Folate as well as the Vitamin D and Ferritin you've already had done.

Google B12 and Folate deficiency symptoms.

My temperature was low. I believe normal is 36.5 c some say 37. Mine has been as low as 34.9. When taking underarm we need to add 1 point. Under tongue accurate. Not sure how that translates into F.

I would suggest writing lists. List your symptoms as you have posted. Requests and concerns.

You really need FreeT4 and FreeT3 tested as well. But if you get antibodies tested and they are raised, then at least you will know you have Hashimoto's Autoimmune Thyroiditis, which is responsible for Hypothyroidism in most patients.

Hope this helps.

[Mary-intussuception in reply to Mary-intussuception]

ps

With Hashimoto's, bloods can fluctuate. I had Hypothyroid Blood results in 2008, however no one told me. These were noticed by a Rheumatologist in 2010 so he did repeats. They came back 'normal ' so he said Thyroid's OK and diagnosed Fibromyalgia !!!!!!

I applied for copies of my hospital records ( didn't pay the £50 as I applied within 40 days of last being seen - under a few Consultants at the time).

My records revealed that my 2010 'normal ' results were actually bottom of 'normal' range T4 and high end of TSH as were others pre 2008 Hypo results. Sadly, doctors say normal when in range even if only just. But it was significant to my Endocrinologist that I was overtly Hypothyroid in 2008. You were, in 2013.

I asked my GP to send me for an Ultrasound scan of my Thyroid (as advised by a helpline) and the morning after the scan he made an urgent referal to an Endocrinologist.

It was the Endocrinologist who tested for Antibodies and also arranged an urgent Short Synacthen Test to check my adrenals first. Which were OK so I then started Levo.

[dococ6 in reply to Mary-intussuception]

Thank you for your reply Mary-Intussusception.

The Dr told me I was within ranges and didn't have Hypothyroid in 2013.

I did continue Vit D and several other vitamins up until a month ago and have been out in the sun a lot over the last few months, so you're right - it's probably masked.

I will see if I can get any of the tests done tomorrow and also get a print of the previous ones if possible and put an update on... I'll google the B12 and Folate deficiency in a moment - Interestingly, my Mum is deficient in both and my Dad was deficient in Folate.

I did the temperature under the tongue, my temp in Celcius was 35.83, so not quite as low as yours.

If the Dr isn't helpful, I will probably opt to get the tests done privately and will put an update on here after.

Very interesting to learn about the blood levels fluctuating, hopefully, it will be diagnosable when I get it re-checked.

Thanks for your help

[Mary-intussuception in reply to dococ6]

- 2013 private blood tests results:

T4 63.48 (66.0 - 181.0)

Which doctor said this was not a Hypothyroid result? The one you saw the, or the GP you saw recently? Is he aware of this old result? Didn't the lab write a comment on the report at the time.

This is definitely under range and therefore Hypothyroid.

About the Vitamin D, why did you stop taking the supplements a month ago. Was it because of a recent high test result?

Your temperature is still a bit low. Mine's usually around 36 now or 36.3. I don't bother to check unless feeling unwell. The low temperature was significant to my Endo back in 2011.

[greygoose]

You're hypo. You're hypo as soon as your TSH hits 3. And, had you had your test done in the early morning, fasting, it would have been even higher.

Doctors don't know what hypo symptoms are. So, for a doctor to say you don't have the symptoms of hypo, is just rubbish. You have a lot of them. You also have symptoms of low nutrients. I would advise you to get private tests, because it's doubtful you'll get your GP to do them for you. You need :

TSH

FT4

FT3

TPOab

TgAB

vit d

vit B12

folate

ferritin

When you have all those results, you'll have a better idea of where you are and what to do next. Yes, I know you just had vit D and ferritin done, but you don't have the results. 'Normal' just means 'in range'. But, it's where in the range the results fall that counts. Right at the bottom of the range isn't right. The ranges are vast.

Details of private testing on the main page of Thyroid UK. And, tomorrow, Thursday, is special offers day! Don't miss it.

[dococ6 in reply to greygoose]

Thank you for your reply greygoose.

I will definitely have the tests done fasting, first thing in the morning next time.

The second Dr really wasn't interested at all, as the blood results of the other tests all said 'normal', when I asked about the symptoms the Dr couldn't explain them and recommended to see if I still had the symptoms in a month and if so, to go back for re-testing with another GP who may do different tests for Rheumatoid issues.

Thank you for your advice regarding which tests are needed, I will see what the Dr has to say tomorrow and will probably go ahead and order them privately (thanks for the Thyroid Thursday tip)

[greygoose in reply to dococ6]

You're welcome.

[shaws]

Yes, I think you are hypothyroid. Tick off symptoms below.

I think you should ask for a Full Thyroid Blood test which is:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Also B12, Vit D, iron, ferritin and folate.

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

The blood test should be at the very earliest, fasting, and if you were taking thyroid hormone replacement (usually levothyroxine) allow a gap of 24 hours between last dose and test and take afterwards. This helps TH to be at its highest as it reduces during the day.

[dococ6 in reply to shaws]

Thank you for your reply and suggested tests to have done, Shaws.

I will ensure they're done as early as possible and fasting. I'm not taking any medication or supplements at all currently.

I'll see what the Dr has to say tomorrow and if not try and get the tests done privately instead and will put an update on after that.

Thank you for the symptom's link, I can tick more than I listed above.

Thanks for your advice

[humanbean]

T3 (Triiodothyronine) 1.52 nmol/l (1.30-3.10)

T4 (Thyroxine) 63.48 nmol/l (66.0 - 181.0)

Those results above look like Total T3 and Total T4 to me. Those particular tests aren't helpful - you need Free T4 and Free T3 to be tested, rather than Totals.

[dococ6 in reply to humanbean]

Thank you for your reply Humanbean.

I think you could be right, i'm not really sure... I will try and get the Free T3/T4 tests done and will put an update after Thank you for your advice.

[ladyabosso]

I think it would also be advisable to get test for Rheumatoid Arthritis (auto immune) Your hands and feet feeling tight and cramped would be a sign of this.

[dococ6 in reply to ladyabosso]

Thank you for your reply ladyabosso.

My Mother and Sibling both have that, so I did wonder about it being a possibility also. The previous Dr first did test for (inflammation markers) ESR/CRP and both were 'normal' apparently... I saw a different Dr today and they didn't think it was Arthritis... So getting some other testing done (Thyroid included), so hopefully that will yield some results! I'll keep you posted.