Has stress caused my symptoms to return or is it the wrong dose of levothyroxine?

[Alipatsam]

Hi all, I was diagnosed with central hypothyroidism in 2015 by a private consultant after my GP failed to diagnose me despite 8 visits to surgery in 2014. I wasn’t sleeping, put on 5 stone in weight, had unbearable pains in legs due to edema, generally felt rubbish, constantly cold, lost outer eyebrows, had no reflexes etc etc. I was started on levothyroxine and am currently on 75mg Mon - Thursday and 100mg Fri - Sun and for the last 5 years I have been generally well and symptom free. However in my battle to get my GP to accept my diagnosis and to get treatment on the NHS my health has taken a turn for the worse. I made an official complaint against my doctor to CCG, NHS England and the Ombudsman and I have got nowhere. The Ombudsman suggested I ask for a NHS referral to a specialised pituitary unit (recommended by the Pituitary Foundation) which my GP has refused to do and he has now removed me from the patient list. Subsequently I am no longer sleeping, my leg edema has returned and in less than 2 months I have put on almost 2 stone. As I didn’t feel well and I have no GP I had my bloods checked by medicheck, results as follows

TSH 2.47 (0.27-4.2)

FT3 3.86 (3.1 -6.8)

FT4 19.7 (12-22)

Thyroglobulin 54.5 < 115

Thyroid Peroxidase 83 < 34

Am I under / over medicated or simply stressed?

[haggisplant]

Are you still taking thyroxine? Ie is that result while on thyroxine?

I’m very shocked that they’re not taking you seriously.

I’d not be well at tsh 2.5. Id suggest 100 daily and re test after two - 3 months though I think you’ll need a bit more eventually.

[Alipatsam in reply to haggisplant]

Yes I am still taking my levothyroxine.

[25joyce]

I’m no expert but I would say you are having trouble converting T4 to T3

[Marz]

FT3 low in range which could be causing symptoms. How are your levels of B12 - Folate - Ferritin - VitD ? If low in range could be affecting conversion of T4 into T3 ..

[Alipatsam in reply to Marz]

I haven’t had them checked recently. When I first went to my GP in 2014 my Vitamin D was very low at 36 my Endo prescribes and monitors my Vitamin D which is now around 120 but doesn’t look at my B12 etc

[Marz in reply to Alipatsam]

Are you supplementing B12 - ? - if so results will be skewed ! Low Ferritin and low iron can affect conversion. Check Folate too ..

Are you taking co-factors with VitD ?

[Alipatsam in reply to Marz]

No all I take is levothyroxine, Vitamin D, spironolactone and fuseomide.

[Alipatsam in reply to Marz]

Sorry I don’t know what this is

[Marz in reply to Alipatsam]

Co-factors when taking VitD are magnesium and VitK2-MK7. How much VitD are you taking ?

[Alipatsam in reply to Marz]

I take one 20,000 unit (500mcg) weekly

[Marz in reply to Alipatsam]

Is your VitD in tablet or gel form ? I have read that taking it daily is more effective. When taking VitD it can improve the uptake of calcium from foods and too much calcium is not good - so taking the K2-MK7 helps to direct calcium away from the arteries and into the bones and teeth ! Magnesium helps the workings of VitD. Do you take your dose with good fats ? - VitD is fat soluble hence why the gel capsules containing oil are good

[Alipatsam in reply to Marz]

I take cholecalciferol (soft gelatin capsules)

[Marz in reply to Alipatsam]

Do you take them away from your Levothyroxine ? 4 hours is suggested ...

[Alipatsam in reply to Marz]

Yes I do. I wake up around 6.00am and take the levothyroxine completely on its own with water for better absorption.

[Alipatsam]

No all I take is levothyroxine, Vitamin D, spironolactone and fuseomide.

[Marz in reply to Alipatsam]

What are the last two for ?

[Alipatsam in reply to Marz]

They are to treat fluid retention / edema

[Marz in reply to Alipatsam]

Fluid retention could be due to your LOW T3 ... Do the drugs work ?

[Alipatsam in reply to Marz]

They have until I received the news from the Ombudsman and now they seem to have stopped working. I know the weight gain is due to fluid retention which is why I wondered if it could be stress related.

[Marz in reply to Alipatsam]

More likely due to your LOW T3 . Could also be stress - but then your body will handle stress better if your T3 levels are optimal. Adrenals - that produce stress hormones need good levels of T3 - and VitC

[shaws]

Time to change your doctor and take your health into your own hands.

You are undermedicated to have:

TSH 2.47 (0.27-4.2) - too high - the aim is 1 or lower although many doctors believe that even the top of your range (4.2) is fine as it is within the range.

FT3 3.86 (3.1 -6.8) - far too low. T3 is the Active Thyroid Hormone and we have millions of T3 receptor cells: brain and heart contain the most. We cannot function with insufficient T3.

FT4 19.7 (12-22) - As another has mentioned, you may not be able to convert T4 to T3. T4 (levothyroxine) is an inactive hormone and has to convert to T3 (liothyronine) the Active hormone.

Did you have your blood test as early as possible and fasting? Did you allow a gap of 24 hours between your last dose of levo and the test and take it afterwards?

If you are unable to convert T4 into sufficient T3, you will not feel well. You may need a combination dose and you should ask to be referred to an endocrinologist who may prescribe a T4/T3 combination. If you're in the UK, the cost of T3 is astronomical and the result was to remove it from being prescribed. Some members source their own T3.

[Alipatsam in reply to shaws]

Yes my bloods were fasting and taken at 8.10am 24 HRs after levothyroxine. I don’t have a doctor at the moment as I have been struck off for challenging him and his refusal to accept my diagnosis of central hypothyroidism. For the last 4 years my TSH has been very low at 0.50 which he claimed was due to levothyroxine suppressing my thyroid. But with central hypothyroidism the TSH is uniterpretable I believe. In the last 8 weeks I feel everything has gone haywire hence I had my bloods checked. What do the elevated thyroid peroxidase mean?

[shaws in reply to Alipatsam]

High antibodies mean you have an Autoimmune Thyroid Disease, also called Hashimotos. Going gluten-free can help reduce the antibodies which attack the thyroid gland (wax and wane) until you are hypothyroid. Treatment is the same as for hypothyroidism.

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

mayoclinic.org/thyroid-dise...

[Alipatsam in reply to shaws]

I have a double appointment at another GP surgery as a temporary patient on 3/7/19. Would the elevated TPO be enough to prove that I should be on levothyroxine via the NHS?