Thyroid UK
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Endo says he doesn't understand results

Hi I am worried my endo is going to discharge me because he says he doesn't understand my results going from

TSH 0.02 (0.2 - 4.2)

Free T4 22.7 (12 - 22)

Free T3 4.8 (3.1 - 6.8)

TPO antibodies 574.3 (<34)

In October 2017 to

TSH 4.69 (0.2 - 4.2)

Free T4 14.6 (12 - 22)

Free T3 3.7 (3.1 - 6.8)

In December 2017 on the same dose of thyroxine (175mcg)

I am suffering with feeling tired, hair falling out, joints aching, puffy eyes, looking pale, red and black marks under eyes

Diagnosed 2013 with hypothyroidism.

Thanks in advance for any advice.

21 Replies
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If your Endo doesn't understand how your results could vary then he's not much of an Endo and doesn't know much.

Has your Endo told you that you've got autoimmune thyroid disease otherwise known as Hashimotos? You can read more about it here thyroiduk.org.uk/tuk/about_... It's common for blood test results to fluctate with Hashimotos.

I wouldn't worry too much about what happens with your ENdo as it doesn't sound like he's helping you that much anyway. You'll likely get better help from this forum and your GP who can prescribe your levothyroxine.

Your last set of blood test results show you are undermedicated and need a dose increase of 25mcg and retest in 6 weeks and adjust until TSH is around 1 or a little lower which is where most people feel well.

Your other symptoms are likely low vitamin levels.

feeling tired, hair falling out, These are possible symptoms of low iron and feeling tired could also be low B12.

joints aching, This is a possible symptom of low vitamin D level.

puffy eyes, This is likely due to low thyroid hormone level

looking pale, red and black marks under eyes This could be both low iron levels or possibly low B12.

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Hi my endo has never mentioned Hashimotos.

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Doctors generally call it autoimmune thyroiditis but it's known around the world as Hashimotos after the physician who first described it.

You can read some guidelines here that mention Hashimotos and how to diagnose it. It seems Germany and Japan are ahead of the UK and America on diagnosis, treatment and care of thyroid conditions.

japanthyroid.jp/en/guidelin...

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Hi sorry he didn't call it anything. Just said I have primary hypothyroidism

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Well, you have primary hypothyroidism but it's of an autoimmune variety. This means you have an autoimmune condition which is important to know.

There are various things you can do to minimise the activity of the antibodies. You can supplement around 100mcg and no more than 200mcg of Selenium daily which may help. Also it's suggested that you should keep your TSH low which may help to prevent autoimmune response.

Selenium daily allowance recommendations

webmd.com/a-to-z-guides/sup...

Selenium Research NCBI

ncbi.nlm.nih.gov/pmc/articl...

Having one autoimmune condition can make you more prone to another which is why your doctor should rule out permicious anaemia if you have symptoms of B12 deficiency.

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Ferritin 17 (15 - 150) iron stopped 2 years ago

Folate 2.2 (4.6 - 18.7)

Vitamin B12 200 (190 - 900)

Vitamin D 30.2 (25 - 50 deficiency)

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These are all much too low. Were you referred to a haematologist when first diagnosed iron deficient? If so, ask to be referred back again.

Are you in the UK? If so there are guidelines your GP should follow. Your vitamin D is only .2 above the level at which you should recieve loading doses so I would suggest your GP should treat you as though you were under 30 and prescribe loading doses of vitamin D and then an adequate maintenance dose. You need to aim for a level around 100nmol. Ask your GP for the correct treatment according to the NICE guidelines or local CCG guidelines. Local CCG guidelines will be similar.

cks.nice.org.uk/vitamin-d-d...

You need to take magnesium and K2-MK7 with vitamin D3 in order to absorb the vitamin D effectively. Magnesium citrate is ok but there are other choices for magnesium.

naturalnews.com/046401_magn...

Have you got symptoms of B12 deficiency because if so, I advise you to post your B12 and folate results along with an outline of your thyroid condition and symptoms, low ferritin etc on the HealthUnlocked Pernicious Anaemia forum healthunlocked.com/pasoc and ask their advice about what your GP should be doing. Really, it looks like you need further investigations to rule out pernicious anaemia. Your GP should check for intrinsic factor antibodies.

B12 symptoms of deficiency

b12deficiency.info/signs-an...

B12 The Guidelines Doctors follow

onlinelibrary.wiley.com/doi...

onlinelibrary.wiley.com/doi...

Ferritin needs to be at least 70 or mid-range for thyroid hormone to function properly. Have you had a full iron panel because if not, your GP needs to do one.

Iron deficiency anaemia NICE guidelines

cks.nice.org.uk/anaemia-iro...

The importance of vitamins and thyroid function

americannutritionassociatio...

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Yes referred to haematologist when first iron deficient. I am in Uk. I have symptoms of B12 deficiency and iron panel was iron 7 (6 - 26) transferrin 13 (12 - 45)

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Given that you were under a haematologist when first diagnosed, I would ask to be referred back again. Your iron levels although in range are insufficient for thyroid hormone to work effectively and ferritin is much too low so your iron stores are depleted.

If GP will not refer you back to a haematologist he/she should start you on ferrous fumerate or similar 3 times a day right away. You can also raise iron levels with diet.

Raising iron levels through diet

You can help raise your iron level by a maximum 200g per week of liver, no more, due to its high Vit A content, and include lots of iron rich foods in your diet, weblink posted by SeasideSusie below.

apjcn.nhri.org.tw/server/in...

Helping iron levels with diet - post on HealthUnlocked.

healthunlocked.com/thyroidu...

Iron deficiency anaemia NICE guidelines

cks.nice.org.uk/anaemia-iro...

Iron results indications

rt3-adrenals.org/Iron_test_...

Folate supplements should not be started until B12 deficiency as been investigated. Folate supplements can mask B12 deficiency and cause more severe problems. Best advice from the Pernicious Anaemia forum.

Get an urgent appointment tomorrow with your GP to address these deficiencies.

Right it's late now - off to sleep!

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Yes I'm off to bed now. Thanks

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Oh my goodness! Wish663, you are really being let down by doctors :( These are terribly terribly low, and you will be experiencing a lot of symptoms from this.

The rule of thumb is that these should all the halfway up their ranges, and you will often be better off with them even higher, for example the recommended vitamin D is 100+

You should be receiving treatment for each one of these, and for some you need to see a specialist as they are very serious. You are getting excellent advice from knowledgeable members, but all I can add is take these very seriously. And be prepared to fight with doctors, as they know very little about vitamins. Many you can treat yourself with over the counter supplements.

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Welcome to the forum. So glad you have found us as your results are dire but great advice above. When vitamins etc aren't right then your thyroid can't work properly. You need these to be spot on so that you thyroid can convert the T4 which is inactive to the active T3 which every cell in our body needs to work properly. So that also shows in your test results with the FT4 being a lot higher than your FT3 in there respective ranges. So as you improve then your FT4 may well lower and your FT3 increase because more of it is being converted but you may need to tweak you dose a little as well so look out for that.

Your engo has t a clue and most likely is more of a diabetic specialist. He certainly doesn't understand the Thyroid but we are used to seeing that. Hopefully as you supplement then you will feel some improvements and get your life back but be patient as things in the Thyroid world move slowly.

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Great advice from Nanaedake and the others. I can’t understand how your endo can’t understand your results - let alone tell you he can’t understand them!

You would think if he was that puzzled he would ask someone more senior either in person or via one of those computer links that doctors have access to.

It sounds like the endocrinologist you are seeing specialises in diabetes rather than in the thyroid - is it possible to be referred to someone who specialises in Thyroid problems?

Your vitamins and minerals are all too low - for your thyroid to work well they all need to be near the top of their ranges. We’re you ever checked out for pernicious anaemia?

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Your endo is obviously useless, probably a Diabetes specialist

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

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

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

You MUST improve these so that thyroid hormones can work better

Your GP should be prescribing to correct

See these posts With Low vitamins due to under medication

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

And this where Low vitamins causing low TSH high FT4 and low FT3

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Getting vitamins optimal and strictly gluten free will all help

If FT3 remains low after this then, like many with Hashimoto's you may need small dose of T3 in addition to T4

If so getting DNA testing may help in your request. Testing DIO2 gene variation, but it's currently only available privately apart from In Swale CCG Kent

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

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

Read as much as possible about Hashimoto's

Medics in the country are so behind on latest research and treatment

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your TSH results change from 0.02 (Oct 2017) to 4.69 (Dec 2017).

Was time of day when you had blood tests the same?

Did you fast before blood tests both times?

How long did you fast each time?

In Western Australia they tell me now NOT to fast before tests as it makes no difference, but I still fast. They also tell me to have blood tests at the same time of day so as to be consistent. I think this is important. If fasting, it is important not to overfast. Few people seem to know about this but the blood nurse said ideally it should be 10-12 hrs fast. Sometimes i fast for 14-15 hours which they say is too much. If you fast for 16 hours they won't take blood for TSH testing. What time of day did you have yuor blood tests on each occasion?

Who can tell me about whether I should fast for 10 hrs, 12 hours or more?

Thanks

Aussiethyroid

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On here, we usually say 'over-night', which would be about 8 hours. And it does make a difference, because TSH drops after eating - but I wouldn't expect a medic to know that. TSH is highest early in the morning and before eating.

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Both bloods done in morning before 9

Fasted both times

8 hours for fasting both times

Is there a problem with what I have been doing?

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Make sure you take your levo after the blood test if not already doing so. Otherwise you're doing blood tests the best way.

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Hi Wish663. I just read your post and the tons of great advice you have been given. It does appear to me also, someone finally on the upward swing of a long (prescription free) battle with Hashimotos, that this is, in fact, what you have. My plight, as briefly as possible (it’s been a long haul)...

I had the same symptoms that you have with ‘foggy brain’ as an additional strike. When I started to lose my hair it bounced my worry into overdrive. Of course by then I was already taking selenium (important to assist your thyroid), b12 (help with your low energy level), Vit. C, and other important vitamins/minerals that support the thyroid...much like the advice you have been given here.

After MUCH research (and tears, and confusion, and frustration), I began seeing a DOM about a year ago. He diagnosed me with Hashimotos...no one else had. They only told me I had hypothyroidism...which was not the entire story...and tried to give me the same prescription meds they give everyone diagnosed with hypothyroidism. But, my goal was to stay off of prescription meds and not complicate my symptoms with symptoms from drugs...which all doctors in the system prescribe because they don’t completely understand the disease. And, to have someone actually listen and care about what I was saying. Someone who could help me piece it all together. It was the best decision I ever made for my health and well being.

Hashimotos is somewhat individualized in that you need to find out what is causing the inflammation in your body while still doing and taking the right things to give your thyroid the support your body automatically cannot. Your diet has to change to get well and the cause of inflammation can be as simple as a food/foods allergy that is making a difference in how you feel and how your body is reacting with the inflammation. It is a trial and error process...but you have to keep trying. Even with all the different elimination diets, my life actually never changed much, nor did my numbers, until I began taking a complex Biotin/collagen in a powder form. My numbers went from the high 700’s to the 400’s (which is still really high) after only 3 months and, because that is such a huge change in numbers, I am hoping for even better results further down the road. The DOM immediately increased my Vitamin D and gave me natural medicine drops to help decrease the inflammation in my body until we find out what is causing it. This is very important to assist your body with fighting other autoimmune complications that can occur with the Hashimotos. The Vitamin D will also help you with the lethargy...which is otherwise just completely annoying to someone like me who is always on the go and excercises a lot. And, I know it is annoying to you too.

Perhaps you would do better seeking natural medicine assistance like I did, rather than settling for the next prescription they toss at you for this month’s symptom? Search for someone who understands what herbs, foods, and supplements support and heal your body. Someone who has experience with Hashimotos.

I wish you well with your plight. It can take a while to improve, but it will happen if you are diligent in your efforts. After all, I am living proof!

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What dose of thyroxine are you on, when did you start taking thyroxine and were you on the same dose before both blood tests?

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Your vitamin and iron/ferritin are chronically low and you have had a drastic change in your thyroid results. I would ask your GP or the endo to explain/investigate why your levels are so low. This happened to me and after three years of increasing thyroxin dose and popping iron and vitamin tablets I asked WHY and they tested me for Coeliac and that was my problem. I wouldn't be surprised if you have a gut absorption problem

Many of your symptoms are due to the low levels you have with in turn mean your thyroid cannot function optimally nor can the thyroxin be used properly. Hair loss is a major symptom of low ferritin and low iron and low vitamins are major symptoms of Coeliac which is common for some of us to have both thyroid and coeliac. There are other things that can affect gut absorption too such as Candida and some medicines. Please ask your Dr to investigate your gut

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