Still feeling rough.

[Goldengirl01]

Hi there, I had a total thyroidectomy last July 2018 and was told I would feel a new woman, ha!! After all this time I still feel light headed at times, am snappy, have palpitations now and again, can’t sleep the whole night through so feel awful the next day and basically am finding it hard to function properly. I am on 75mcg Levothyroxine daily, my bloods always always come back normal but I know my body and somethings not right. My GP said she hasn’t an answer as bloods are normal, bp is ok, temp ok. The worst part is the light headedness and I have had exercise for that but have felt no difference. I was just wondering if anyone else is feeling the same as me

[Nanaedake]

Sorry you're feeling unwell. Thyroidectomy is not a quick fix and I wish doctors would stop giving patients that impression. However, it could be less than optimal vitamin levels causing problems. Get a print out of your blood test results and pidt them here for some advice. X

[Goldengirl01 in reply to Nanaedake]

Hi, thanks for your reply, I have a gp appt Friday so I’m going to ask for bloods for B12 and vit D. I have had some done already but I don’t know if we can take pic of results or type them out? I’m feel too tired to do the latter.x

[SlowDragon Administrator in reply to Goldengirl01]

You can add one photo to this original post

Click edit

Add photo

Be careful to obscure any personal details like name and DOB

[Goldengirl01 in reply to SlowDragon]

I can’t see the edit button sorry

[Goldengirl01 in reply to Goldengirl01]

Found it, thanks.x

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if under treated or following Graves' disease

How much Levothyroxine are you currently taking?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

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]

Professor Toft recent article saying, T3 may be necessary for many especially after thyroidectomy or RAI. Otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

You are entitled to referral to endocrinologist

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

british-thyroid-association...

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Come back with new post once you get vitamin results

Add thyroid results and ranges if you have them already

[SlowDragon Administrator]

The only test results you need to add are

TSH

FT4

FT3

Vitamin D

Folate

B12

Ferritin

We need the ranges too (figures in brackets after each result)

[Goldengirl01 in reply to SlowDragon]

Iv had t3 & t4 done but need to ask for print out. On 11th April 2019 parathyroid hormone level was 7.2pmol/L and it should be 1.10-6.90 no one called to discuss I only found this out at another appt so had another blood test and apparently normal now and I’m not taking anything different

[pennyannie]

Hello Dustpan

Just as a point of reference a fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 and 10 T3 daily.

It just seems obvious to me that if there has been a medical intervention and the thyroid either ablated or surgical removed, that both these vital hormones be on the patients prescription pad.

Some people get by on T4 ( Levothyroxine ) alone, some people simply stop converting T4 to T3 at some point in time and some people simply need both these essential hormones dosed and monitored independently, to bring these two hormones into balance and to a level of wellness acceptable to the patient.

To receive a more detailed answer it will be necessary to see your latest blood test results, including TSH, T3 and T4 numbers and their relevant ranges. It's also necessary to know where your ferritin, folate, B12 and vitamin D are, in their relevant ranges as if vitamins and minerals are not optimal, thyroid function may be compromised.

The photo submitted doesn't appear to cover the above detailed information.

I don't know why you have had a thyroidectomy, but the following is relevant irrespective of the cause of your surgery.

This a very good book that I believe is a go to for all thyroid patients, written by a doctor who has hypothyroidism and I believe treats himself with Natural Desiccated Thyroid.

Your Thyroid and How to Keep It Healthy by Dr Barry Durrant-Peatfield.

It's written is an easy to understand, sometimes funny way, and is all things thyroid, explaining the value of this major gland in the overall wellbeing of our physical, mental, psychological and spiritual well being.

Sorry, just seen that I've repeated some of what has already been said, silly me, didn't look properly before I jumped in with my " soap box " .

[Goldengirl01 in reply to pennyannie]

I had a total thyroidectomy because I had 2 lots of thyrotoxicosis about 5 years apart. And the last time my tsh stopped working and drs didn’t be

Uneven me when I said I felt unwell. My heart was racing and I was sent to hospital and consultant said my tsh was ok so must hav3 an infection somewhere. I told him I need a t3 & t4 done , at first he said no need but after looking at my notes and the last thyrotoxicosis he agreed to. Range is 12-22 I was 95. As I said b4 sometimes my bloods come back ok when I really feel unwell.

[Goldengirl01 in reply to Goldengirl01]

My endo consultant said if I hadn’t gone to dr’s and they eventually sent me to hospital I wo7ld have been blue lighted in and would have suffered heart problems

[SlowDragon Administrator]

Parathyroid levels a bit high

This is most likely to be due to low vitamin D. Extremely common to have vitamin D deficiency when on too little Levothyroxine

Insist GP test vitamin D, folate, ferritin and B12

For parathyroid you need vitamin D, parathyroid and calcium all tested

parathyroid.com/low-vitamin...

Good app for this

calciumpro.com/high-calcium...

endocrinediseases.org/parat...

[Goldengirl01 in reply to SlowDragon]

Calcium was tested

[SlowDragon Administrator in reply to Goldengirl01]

But vitamin D wasn't

Low vitamin D is most likely reason for slightly raised parathyroid result

Ask GP to test vitamin D

Or there are apparently no relevant Thyroid and vitamin test results done strongly recommend getting full Thyroid and vitamin testing privately

Thousands forced to do this to make progress. Hence almost 100,000 members on here

Your only on 75mcg Levothyroxine. This is only one step up from starter dose

Low vitamins and/or poor conversion are extremely common.

First step is to get full Thyroid and vitamin testing. Via GP or privately

TSH

FT3

FT4

Folate

Ferritin

B12

Vitamin D

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

Medichecks Thyroid plus ultra vitamin tests all these

Come back with new post once you get results and ranges

[Goldengirl01 in reply to SlowDragon]

As in original post I’m on 75mcg Levo

[SlowDragon Administrator in reply to Goldengirl01]

75mcg is only one step above starter dose

When inadequately treated, vitamin levels drop, then TSH often drops too. Thyroid results look "normal" but you remain hypothyroid

Lightheaded can be low B12

NHS guidelines on Levothyroxine including what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)

nhs.uk/medicines/levothyrox...

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response.

The usual maintenance dose is 100–200 micrograms once daily.

Just testing TSH is completely inadequate

[SlowDragon Administrator in reply to Goldengirl01]

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away,

some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine.

Though it is the only one for lactose intolerant patients

[Goldengirl01]

Thanks will ask on Thursday.x

[Goldengirl01]

My chemists label says take half before food (Levo)

[Angel_of_the_North in reply to Goldengirl01]

At least an hour before food, tea or coffee, or two hours after is recommended. Four hours away from calcium, oestrogen, iron or magnesium.

[Angel_of_the_North]

No thyroid results there. I would be worried about the high PTH, though and demand a referral to a specialist. Perhaps parathyroids were damaged during surgery. Very unlikely that 75mcg levo is enough for someone without a thyroid unless very small.

[Hidden]

Much like yourself after my thyroid removal and 8 months on Levo I joined this site, before the operation I was fine and not on any medication. I became ill and knew that I wasn't on the right meds. I ditched the GP and Endo and started self medicating with NDT I am now well again.

You should have a private blood test done for answers. I have a Medichecks one called ThyroidUltraVit post the results on here with the ranges for answers. Take the test fist thing and fasting, leaving off Levo for 24 hours prior to the test.

You can feel well by using the good advice on this site and applying it.

[Goldengirl01 in reply to Hidden]

Can you give your view on my blood results please, they are below thanks

[Goldengirl01]

Serum 25-HO vit D3 level 52;nmol/L (50.00-174.00nmol/L. Please note new vitamin D assay from 14/5/18 results are approx 20% lower than previous method.

Thyroid test normal

Serum TSH level 3.86 mu/L (0.27-4.20)

Free T4. 19.5 (10.80-25.50)

Free T3 3.2 (3.10-6.6.80)

TSH creeping up on high side and free t3 is low

[Goldengirl01 in reply to Goldengirl01]

This was beginning of April and I’m gradually feeling worse. Gp appointment later

[Hidden in reply to Goldengirl01]

I have looked at them and as other people have told you your 75 mcg of Levo is not enough for someone without a thyroid. Your TSH should be closer to 1. Your FT3 should be closer to the top range i.e. 5 plus.

I landed up feeling very ill when dealing with the GP and Endos, none of these have a clue about the thyroid I only started to feel well after joining this site and now self medicate with NDT which I source myself.

Your dose of 75 mcg is just a stater dose for people with a thyroid not for someone without one. It can be a constant battle which I don't do I prefer to live a stress free life, therefore, doing my own thing. You have a choice it depends on you. Good Luck.

[Goldengirl01 in reply to Hidden]

Ouch! I only asked, thank you for your time.

[Hidden]

Sorry for sounding bossy, I didn't mean to do that I was only trying to help. Some of the people of here have been feeling bad for years but just plod on and on and ask the same questions but never apply themselves. That is not you, and I hope that you can get better soon. Yes, I do get a little exasperated at times, not good. Slapped wrist.

[Goldengirl01 in reply to Hidden]

Hi Hun, new blood results

Serum folate normal 7 ug/L

But B12 normal 359ng/L (180-999)

TSH 5.1 mu/L (0.27-4.20)

T4 16.3 pmol/L (10.80-25.50)

T3 3.6 “. (3.10-6.80)

VitD3 level 56 nmol/L (50.00-174.00)

Renal profile normal

Serum sodium 144 nmol/L (133.00-146.00)

“. Potassium 4.3 (3.50-5.30)

Urea 6.8 (2.50-7.80)

Creatinine72 (44.00-80.00)

Crp 4.4 mg/L (<5.00mg/L)

Erythrocytes sed rate 13 mm/h (1.00-20.00)

Still waiting for parathyroid results.

What’s your opinion on this as a reminder Iv had total thyroidectomy. I asked for Levo to be raised so I’m on 100mcg instead of 75mcg . Bloods done Before I upped dose .

Thank you

[Goldengirl01]

Thank you for apology, I know you were only helping, I’m probably feeling a bit sensitive because of how I’m feeling, especially when bloods say something different to how I feel. I have to have more bloods done on Wednesday and I see my usual GP tomorrow evening but she did say she didn’t know what was wrong as bloods were fine so it’s hard work getting them to listen to anything other than what the results are in front of them. I will ask about parathyroid as that was not normal last time. Thanks Bunnyjean.x

[Goldengirl01]

Hi janeyjaney, I went to gp on Tuesday and said that I was told 75mcg is not enough when without a thyroid so my dose has been put up to 100mcg and retest In 6 weeks. I was feeling so dizzy and have been diagnosed with sleep apnoea which I hear is a side effect of being hypo. I asked to have more bloods done so as well as tsh, t3&4, Im Having crp, b12, folate, ferritin and vit D again as I noticed it was low the last time so hopefully most will be back tomorrow Friday. When I get them I will post them but unfortunately my bloods don’t always show if something is wrong, like my bloods before TT. Tsh showed everything to be fine and had stopped working at one point t4 was 95 when I got to hospital when the range is 12-22 hence thyroidectomy fairly quickly.

[Goldengirl01 in reply to Goldengirl01]

I have to say the next day after I took the higher dose I felt somewhat better but still a little dizzy and still tired as still wake in the night but hopefully it will continue to improve.