Normal blood tests but I feel awful.

[Denny333]

Hello I'm new on here. I was diagnosed with an underactive thyroid about 6 years ago and have been on 50mg of Levothyroxine ever since. Still suffering with awful tiredness, very dry skin, my eyebrows are thin & barely grow, feeling cold & other typical symptoms. My recent bloods test say normal no action yet I feel awful. My doctors have been good enough to request t4 & t3 levels as normally they only do TSH.

Serum TSH level - 3.5 mu/l - (0.35 - 5.0)

Serum T4 level - 15.6 pmol/l (9 - 24)

Serum T3 level - 3.6 pmol/l (3.5 - 6.5)

Vitamin D Serum total 25-OH 64 nmol/l (75 - 200) advised to take a supplement as a bit low.

any thoughts would be appreciated

[SeasideSusie Remembering]

Hi Denny333 and welcome.

I think your doctor's have let you down big time

50mcg Levo is a starter dose. After you were diagnosed and prescribed your starter dose, you should have been re-tested after 6 weeks, dose increased by 25mcg, retested after another 6 weeks, dose increased again, etc, until your symptoms alleviated.

The aim of a treated hypo patient is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their ranges.

Your TSH is far too high for someone on Levo. Your FT4 is less than half way through range and your FT3 has just scraped in at the bottom of range, no wonder you are still suffering all those symptoms.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, wrote this in a Pulse Online magazine article:

"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)."

Maybe your GP would be interested in this. If you email [e-mail] she will let you have a copy of the article which you can print out and show your GP because he seems to need educating.

Whilst at your next appointment ask for the following tests

Thyroid Peroxidase antibodies

Thyroglobulin antibodies

The antibody tests will rule out, or in, autoimmune thyroid disease.

Plus

B12

Ferritin

Folate

All these vitamins and minerals need to be at optimal levels for thyroid hormone to work properly.

Also, when having blood drawn for your thyroid tests, always book the very first appointment in the morning, fast with water only from the previous night's meal (breakfast when you get home), and leave off Levo for 24 hours. That will give you the highest possible TSH which is what we need for a dose increase.

For your Vit D supplement, buy a decent D3 (I like Doctor's Best as it only contains D3 and olive oil) 5000iu and take daily for a couple of months. Retest and when your level reaches the recommended 100-150 reduce to 5000iu alternate days. If your GP won't retest you can get it done with City Assays for £28, an easy at home fingerprick blood spot test.

With D3 we also need to take K2-MK7. Vit D aids absorption of calcium from food and K2 directs the calcium to bones and teeth rather than arteries and soft tissues. Magnesium is another co-factor when taking D3 so you should also take that.

[Denny333 in reply to SeasideSusie]

That has been so helpful. Thank you! I will definitely email for this article & take it to my next appt and I will also ask for the other tests. Thank you also for the recommended vit d to take as the dr didn't advise on what I should take.

[shaws Administrator in reply to Denny333]

Too low a dose can also cause other serious problems and I fail to reason why doctors/endos appear to be the least people to know how to diagnose/treat patients' symptoms rather than the TSH. You state:-

"Serum TSH level - 3.5 mu/l - (0.35 - 5.0)

Serum T4 level - 15.6 pmol/l (9 - 24)

Serum T3 level - 3.6 pmol/l (3.5 - 6.5)"

Once diagnosed our TSH should be down to 1 or lower.

T4 (inactive hormone) is low and the most important T3 (active) is at the bottom of the range instead of towards the top.

No wonder you feel bad. I hope you can now impove your symptoms as we have to read/learn in order to feel much better.

Always have the earliest appointment for the fasting blood test (you can drink water) and allow 24 hours approx between our last dose of levo and the test and take it afterwards.

[Denny333 in reply to shaws]

I wish I had found this site years ago. In less than 24 hours I have been given so much information and with that a better understanding of my results. I will be going back to the dr as soon as I can get an appointment. I will let you know how I get on. Thank you all ☺️

[shaws Administrator in reply to Denny333]

Your GP may not want to change your dose, so change your doctor. They really haven't much idea how bad we can feel when undermedicated. Some doctors pay no attention to Dr Toft's (ex President of the BTA) article. Any increases should be by 25mcg increments every six to eight weeks until you have no symptoms.

Tell your doctor undertreatment can cause more serious illnesses and that you've taken advice from the NHS Choices for thyroid gland dysfunctions.

Some of our members cannot get well on levo although thousands do (but they wont be on this site) there are a few alternatives but may have to self-source as the BTA state that levo is sufficient. However, I think as your dose is increased you will feel much better.

[bluebug]

Your TSH is too high, your T4 is too low, your T3 is too low and your vitamin D level is too low.

The main issue is caused by you being stuck on a starter dose of levo, as while your vitamin D is too low at that level it will be just causing fatigue.

To get your vitamin D up you need to self-supplement as the NHS won't pay for it or if they do will give you some screwed up dose which is ineffective. You need to get 5,000IU supplements of D3 and take one every day for 8-10 weeks. After that take one every other day. Your aim is to get your level to around 100nmol/L. You can buy supplements of Amazon - try Jarrows or Solgar - alternatively try an independent pharmacy. Some sell higher level supplements including generics which do work, while others don't it's just luck of the draw. The high street pharmacies e.g. Boots and Health Shops e.g. Holland and Barretts don't sell high enough doses. You should buy vitamin K2-MK7 and magnesium citrate to take with the vitamin D so it goes into your bones. DO NOT buy calcium or any supplement with calcium in it as you must NOT take it. After 6 months get a private vitamin D test. You can use City Assays for this - thyroiduk.org.uk/tuk/testin...

In regards to your TSH, T4 and T3 levels you need to convince your doctor to increase your dose so your TSH is around 1. I suggest your read this - thyroiduk.org.uk/tuk/diagno... - and print out any relevant information to show your GP. DO NOT mention the forum otherwise they will not take you seriously.

You should stress to the GP that Thyroid UK is a recognised charity for thyroid conditions on NHS Choices and in the NICE guidelines. (In the NICE guidelines they recommended under hyperthyroidism but you DON'T tell the GP that.)

If you have issues with your GP refusing to up your dose of levo come back here and start a new thread.

[Denny333 in reply to bluebug]

Thank you I feel better informed now to be a bit more assertive at my next appt.

[Kathyhandis]

Your t3 is low. They say most people feel better with t3 in the top quarter. Your TSH could afford to drop much lower. You could take more Levo.

[Denny333]

I have finally seen my Dr & she has increased - albeit reluctantly - Levo to 75mg every other day. So I'm now taking 50mg one day then 75mg and a re test in 6 weeks. Every so often my throat hurts to swallow, it was awful yesterday but not as bad today. Is this related to my thyroid?