Confused.: I have been hypothyroid for many years... - Thyroid UK

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Confused.

RattyPatty profile image
9 Replies

I have been hypothyroid for many years on 175mcgs levothyroxin. In March 2018 I moved house and doctors and a blood test showed the following

Serum free T4 level 41 pmol/L. (10.0 - 22)

Serum TSH level <0.01 mu/L (0.3 - 5.5)

I was told I was Hyperthyroid and my Levo reduced by 50 mcgs to 125 mcgs.

During the year to March 2019 my levothyroxin was reduced again by 50 mcgs and I am now on 75 mcgs.

My last GP blood test in March 2019 showed

Serum free T4 level 29 pmol/L ((10.0-22.0)

Serum TSH level <0.01 mu/L. (0.3 - 5.5)

I have also had the following results from Medicheck last week. Their report also said I was over medicated.

TSH 0.152 mIU/L (Range: 0.27 - 4.2)

Free T3 3.5 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine 23.900 pmol/L (Range: 12 - 22)

I could accept the results of these blood tests if I didn't have hypo symptoms. Since the reduction of my Levo from 175 mcg to 75 mcgs I have put on a stone in weight plus other hypo symptoms. Cholesterol up. (I am 5'1" and 11 st 7 lbs)

I am confused as I do not understand why the medication was fine for years but 18 months ago I am diagnosed as being highly over medicated. How can that change as the doctor said that my thyroid won't suddenly start working properly again.

I also asked for the antibodies to be tested in March

Serum thyroid perioxidase concentration <4.00IU/ml (0.0-24.9)

Serum free triiodothyronine level 4.0 pmol/L (3.1 - 6.8)

Serum C reactive protein level 2 mg/L (0.0-9.0)

I know if I go back to the GP with the blood test still showing that I am over medicated she will reduce it again. I can't bear the thought of gaining more weight. (Before I was diagnosed with hypothyroidism one of the reasons I went to the GP was because my weigh went over 12 stone).

Can you offer your opinion as to why I am now over medicated.

Thank you.

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9 Replies
SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Your FT3 is very low, conversion very poor. This could be due to low vitamin levels or high TG antibodies

NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

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

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

fiftyone profile image
fiftyone in reply toSlowDragon

I am hypo and my blood test results always show I am overmedicated. My TSH is 0.0005 and My T4 is several points above the range. However, when they test T3 it is normal. My doctor (and hospital consultant) tried to reduce my thyroxine from 175mcg daily. I am certain they never tested T3. As soon as the dose was reduced, just a bit, I started to get hypo symptoms. I had to change my doctor to someone who took a more holistic approach. What I always say to doctors is: examine me. What over-medicated symptoms do I show? Am I shaking? Am I sweating? Am I mentally confused? Do I have trouble sleeping? Is my heart beat rapid? Of course, there are none of these symptoms.

SlowDragon profile image
SlowDragonAdministrator in reply tofiftyone

Pretty Common on Levothyroxine to need high FT4 and suppressed TSH in order to get high enough FT3

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

tukadmin@thyroiduk.org

Important to regularly retest vitamin D, folate, ferritin and B12

DIYqueen profile image
DIYqueen in reply tofiftyone

my GP mentioned 5 weeks ago I was overmedicated based on TSH of 0.05 (0.3-4.0)

despite my FT4 being well within range (about 3/4).

Before my next appt I have been taking 3 times a day, and averaging, my blood pressure, pulse, temperature. Also, the list of hyper symptoms (lack of them) will be mentioned.

My pulse averages 59-65. My temp averages are 36.0-36.5C and have dipped to 35.1C. Blood pressure averages 130/70 which has been long-term normal for me.

Extreme lethargy, recent weight gain, aches, joint pain, pale etc

Maramonro profile image
Maramonro in reply tofiftyone

Exactly and that is because doctors cannot think outside of box...we are all different and some people are simply not in the range. Frustrating!

NWA6 profile image
NWA6

Stress has caused your autoimmune condition to flare, dumping more thyroxine into your system. Causing too much T4 in your system which has driven down conversion so despite what your Dr’s have said you are not Hyper, you’re still Hypo because your T3 is so low.

I’d have stopped my thyroxine whilst this flare was happening, close monitoring would have showed it calming down and a point at which you could have reintroduced Levo. Too much Levo + natural thyroxine has driven down conversion to T3.

But at this moment you’re high T4 is almost in range now. I wouldn’t change that dose now, I’d just ride it out. Get your Vits and mineral levels checked, work on them and then monitor your T3 levels closely to see if conversion is still a problem or is it returning to normal. If your conversion doesn’t recover then you’ll need to add T3 to your supplements.

SilverAvocado profile image
SilverAvocado

RattyPatty, the most important part of the story is what we can see in your full thyroid panel from Medichecks. Even though your freeT4 is over range, your freeT3 is absolutely rock bottom.

T3 is the active hormone needed by every cell and organ in the body, so the freeT3 result best reflects symptoms. When taking Levothyroxine, which only contains T4, the body has to convert all that T4 into T3 before it can be used. Sometimes our bodies are not good at this, and your blood tests show you are a poor converter.

There may be a reason for this, or it may just be a spontaneous thing. Its actually quite common to do well on Levo for years and then suddenly find it doesn't work as well. Or you may always have been a poor converter and previously had a doctor that dosed you on symptoms and allowed you a high freeT4, or it may be due to low vitamins or other hormones out of balance.

The reason is less important in my view, the solution is to add some T3 to your T4 dose. You need to get that freeT3 up in order to feel well, and you will probably never be able to do that on Levo alone.

Unfortunately we are in the middle of a crisis at the moment of doctors not prescribing T3 :( You may have to source and dose your own, as many of us here do.

RattyPatty profile image
RattyPatty

Thank you for your replies. These are some other results from Medicheck. I had the whole Well Woman check and most came back normal apart from the Globulin and some part of the red blood cell count.

Globulin 37.5 (19-35)

Red blood MCV 101.2fl (81-98)

MCH 34.1 Pg. (27-33)

Vitamin D 64.5 nmol/L. (50-175)

Folate 8.14 mg/L (>3.89)

Ferritin. 86 mg/L (13-150)

B12. 119.00 pmol (37.5-188)

Magnesium 0.86 (0.66-0.99)

SlowDragon profile image
SlowDragonAdministrator in reply toRattyPatty

SeasideSusie or humanbean may comment on first three iron results

Vitamin D is too low. GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve vitamin D by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

If vitamin D is low, B vitamins may be too. As explained by Dr Gominack

healthunlocked.com/thyroidu...

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

I prefer Igennus Super B complex. Nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

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