Blood test results - and some new symptoms

[Sick-and-Tired]

Hi everyone! I posted a few weeks ago because I've finally managed to get myself put on Levothyroxine but have felt no better. I have Hashimotos (although I have yet to find a doctor willing to say I do, but I do have very high antibodies) and have had to fight very hard (and pay a lot of money to private endocrinologists) in order to be trialled on the Levothyroxine.

Getting my doctor to be interested in playing with the dose has so far been impossible - she has just said that as I am in range she is happy.

SlowDragon recommended that I get some more blood tests done and repost.

As it happened, I had some strange new symptoms which prompted me to get an emergency appointment - a few weeks ago I suddenly felt like I couldn't swallow and when I did it was incredibly painful. The pain was strange and went up into my tooth. I googled it and a lot of results said it was a sign of heart problems. I know I should have got it looked at right away but I'm considered a hypochondriac so I decided to sleep on it and see whether it got worse.

It did get better, but after that I suddenly had a fluttering heart that I felt quite regularly. Every 20 minutes or so. I also realised that I had been getting very lightheaded for quite a few weeks.

I let a week go by and when that hadn't got any better I realised I should probably go to see a doctor considering levothyroxine can affect your heart.

Of course initially she suggested it was anxiety, but she took my blood pressure and found that it has suddenly dropped quite significantly. She said she wanted to check my TSH again (which, when last checked was 2.3) and so I asked that while the blood was taken that she test for all the things SlowDragon suggested. She agreed, although unless some results are coming later she hasn't actually ticked half of them (I have some experience with this doctor and stopped seeing her previously because she would forget to ask for important tests to be run!)

Here are the results I do have:

Serum TSH: 4.7 mu/L (0.35-5.0) (This has risen since my last test of 2.3)

Serum free T4: 16 pmol/L (9-24)

Serum free T3: 4.7 pmol/L (3.5-6.5)

Plasma B12: 331 ng/L (200-900)

Serum Folate: 6.4 ug/L (2-17)

Serum Ferritin: 39 ug/L (15-250)

Serum sodium: 139mmol/L (133-146)

Serum potassium: 3.7 mmol/L(3.5-5.3)

Serum creatinine: 59 umol/L (49-90)

Serum urea level: 5.4mmol/L (2.5 - 7.8)

GFR calculated abbreviated MDRD: 60 mL/min (60-99)

Vitamin D: 92 nmol/L (75-200)

Total white blood cell count: 5.5 10*9/L (4-11)

Red blood cell count: 4.69 10*12/L (3.5-5.5)

Haemoglobin estimation: 149 g/L (115-165)

Haematocrit: 0.45 ratio(0.37 - 0.47)

Mean Corpuscular Volume: 96.8 f/L (75-105)

Red Blood Cell Distribut Width: 12.9 (11-15)

Mean corpusc. haemoglobin: 31.9pg (26-35)

MCHC: 329 g/L (290-350)

Platelet Count: 100 10*9/L (150-450)

Hypochromia %: 4.1% (Normal range N/A)

Neutrophil count: 2.4 10*9/L (2 - 7.5)

Lymphocyte count: 2.4 10*9/L (1 - 4)

Monocyte count: 0.4 10*9/L (0.2 - 0.8)

Eosinophil count: 0.1 10*9/L (0.0 - 0.4)

Basophil Count:0.0 10*9/L (0 - 0.1)

I have been taking 50mg of Levothyroxine since March. The blood test was done fasting and I took my last dose of levothyroxine over 24 hours before my test. I also take 20,000 iu of Vitamin D once a week and use a magnesium spray supplement.

(Also, this is strange but the blood tests I've had since being on levothyroxine have been extremely painful both during the test and for over a week after with massive bruising on my entire arm like I've been attacked. Do you think this is just a coincidence? I've never liked needles but always found the idea way worse than reality, but suddenly it's really bad!)

My main concern is that my doctor will either not let me increase my levothyroxine dose or will take me off it altogether as they were so reluctant to let me trial it.

I have an appointment on Tuesday so any suggestion of anything I should raise with them would be greatly appreciated!

Thanks

[SlowDragon Administrator]

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

[Sick-and-Tired in reply to SlowDragon]

Thanks so much! Sadly I haven't heard back from Dionne yet so didn't get to present the article this time. However, k told my doctor about Dr Toft and that he says that TSH should be below 1 and she basically laughed in my face! She has agreed to up my dose to 75mg and retest in 2 months (I negotiated her down from 3)... She didn't initially want to change my dose at all so I really appreciate your advise which helped me fight for the dose change with confidence!

[Marz]

B12 could be higher - over 500 - so take Jarrow Methylcobalamin 5000 mcg from Amazon - and then move down to 1000 mcg. Also a good B complex is needed to keep all the B's in balance - also B9/Folate works with the B12 in the body in an important way.

Co-factors are suggested when taking VitD - I see you are taking Magnesium - but also VitK2 MK7 is also helpful in keeping increased calcium out of the arteries and directing it into the bones.

Bananas contain potassium !

[Sick-and-Tired in reply to Marz]

Thank you for the recommendation, I've just ordered some so will start it as soon as possible - and I bought some bananas today too! 😁

[JacquieCB]

You are not properly dosed. It is extremely common to have heart palpitations while titrating levothyroxine. You'll probably end up at 75. Your D is low. You need 50,000 units per week.

[Sick-and-Tired in reply to JacquieCB]

Great thanks - the doctor wanted me to stop taking the vitamin D as she said my levels were fine! I'll get myself some of the higher dose!

Thanks again!

[SeasideSusie Remembering in reply to Sick-and-Tired]

Sick-and-Tired

Vitamin D: 92 nmol/L (75-200)

I disagree that you need 50,000iu per week.

The Vit D Council recommends a level of 100-150nmol/L. You are close to that level so you need more like 2000-3000iu daily at most and 50,000iu per week is giving you 7,142iu daily which would be the sort of dose needed if your level was down in the 30-40nmol/L region.

Also, if you make Vit D easily from the sun then in the weather we are currently having you should be making plenty of Vit D if you go out in the sun for a short time with skin uncovered and without sunscreen.

The Vit D Council says

vitamindcouncil.org/about-v...

Exposing your skin for a short time will make all the vitamin D your body can produce in one day. In fact, your body can produce 10,000 to 25,000 IU of vitamin D in just a little under the time it takes for your skin to begin to burn. You make the most vitamin D when you expose a large area of your skin, such as your back, rather than a small area such as your face or arms.

so you may actually need very little supplementation at the moment but you certainly will be overdoing it by taking 50,000iu per week.

[JacquieCB in reply to SeasideSusie]

Most of us with auto immune issues do not make enough Vit D from Sun exposure. I live in Florida and I take 50,000 units. It's just enough to put me mid range. She is 92 and should be somewhere between 100 and 150. She definitely needs an increase. You all live in the UK. You have much rain and limited sunshine , right?

[SlowDragon Administrator in reply to JacquieCB]

But we also in UK have vitamin D mouth spray. Often much more effective as it avoids poor gut function affecting uptake of traditional vitamin D tablets

[JacquieCB in reply to SlowDragon]

That's so interesting! Never thought about that! No question thyroid disease can limit uptake.I love learning.

[SlowDragon Administrator in reply to JacquieCB]

The company that makes vitamin D mouth spray also does B12 and recently introduced iron mouth spray too. Iron is often difficult to tolerate with conventional tablet treatment

[JacquieCB in reply to SlowDragon]

That's amazing! Does insurance cover it?

[SlowDragon Administrator in reply to JacquieCB]

No idea. In UK we have to buy our own

[Sick-and-Tired]

Thanks so much for the advice. My doctor did not like the suggestion of getting my TSH below 1 but has agreed to up my dose to get it down from where it is at the moment so that's as much as I can get for now.

She also said that she would normally wait 3 months (!) to test again so has compromised with 8 weeks.

Thanks again!