Thyroid UK

Symptoms in my head?

Hi I have just joined, my endo says my symptoms of hypothyroidism are in my head - sweats, feeling cold, tired, pains in legs, constipation. I take 100mcg levothyroxine diagnosed 2012. Not sure who or what to believe so have come here.

Thanks for replying/advice/support

TSH 6.2 mIU/L (0.27 - 4.20)

Free T4 13.7 pmol/L (12 - 22)

Free T3 4.0 pmol/L (3.1 - 6.8)

TPO antibody 394 IU/mL (<34)

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My word. I've genuinely lost count of the number of posts we've had that are almost exactly like yours with only a slight variation in the numbers.

Somebody is plainly undermedicated, judging by their blood test results, and yet they're told that the symptoms are in their head. The only other variation is people being told to see a psychologist/psychiatrist/start anti-depressants etc.

This is horrible.

You are undermedicated. I'll comment further and I'm sure others will but I wanted to reassure you that you're not alone in being subjected to such unhelpful comments from endocrinologists.

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Ditch your Endocrinologist. If he says it is in your 'head' it certainly isn't in his as he appears to know nothing at all by his awful remark to you. Insensitive and inept medical professional.

You would be better going it alone with your GP prescribing as you were expecting miracles by seeing an Endocrinologist. Many have gone down this road to nowhere.

You are desperately in need of an increase. Your TSH is far too high - should be 1 or lower. Due to having thyroid antibodies this means you have an Autoimmune Thyroid Disease called Hashimoto's. The aim of us taking replacement hormones is that we feel well with relief of clinical symptoms.

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

Blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards. This keep the TSH at its highest as it drops throughout the day and may mean an unnecessary adjustment.

At the next test ask for B12, Vit D, iron, ferritin and folate.

We have to read, learn and ask questions in order to recover our health and it is possible. :)

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Ferritin 22 (15 - 150)

Folate 2.8 (4.6 - 18.7)

Vit D 25.5

Vit B12 210 (190 - 900)

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Your B12 is too low. The aim should be 1,000 but I'll add in SeasideSusie due to her knowledge about blood tests.

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p.s. I see you've had good responses from ITYFIALMCTT

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I could cry for many people in this situation... Just shocking! X

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and diabolical and how many members/patients are given anti-depressants rather than T3 which is most probably low and the cause of contiinuing symptoms.

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Yes.. That happened to me. Made it worse, no improvement and I wasn't actually depressed. I feel great now with t3 Crikey it's a shocking business. X

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It is so shocking that the diagnosis/treatment if not optimal can give us more serious conditions as if hypo isn't enough to contend with particularly if we're not on an optimum with the reliance upon the TSH only and many doctors believing 'somewhere' in the range is fine.

The ignorance shown by the majority of the medical profession is so awful and those at the very top have been spouting the same views for a very long time.

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"TSH 6.2 mIU/L (0.27 - 4.20)

Free T4 13.7 pmol/L (12 - 22)

Free T3 4.0 pmol/L (3.1 - 6.8)

TPO antibody 394 IU/mL (<34)"

An appropriately-medicated hypo patient tends to find that the TSH is suppressed to <1 as that is typical for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo. Your TSH is above the range and a long way from <1; your FT4 is near the bottom of the reference range, and your FT3 is within the reference range but fairly low within it.

You are undermedicated.

As Shaws mentions, you have Hashimoto's - the commonest contributor to hypothyroidism. As part of this, patients often find that they have poor gut absorption that affects their overall vitamin and mineral levels.

The experience of members here is that there needs to be a watchful eye on the levels of thyroid hormones and vitamin and mineral levels because there's a difference between something being within a reference range and being in a part of the range that is optimal for effective use of thyroid hormones (whether our own or supplemented/prescribed ones).

If you have the results of your recent blood work for any vitamins and minerals like iron, ferritin, folate, vitamins B12 and D), please post them, along with their reference ranges, as it will help members to comment.

If you don't have the results, please obtain a copy by contacting your GP's reception, and then post them, with details of your levo. etc. and that might allow members to make helpful observations or suggestions.

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Ferritin 22 (15 - 150)

Folate 2.8 (4.6 - 18.7)

Vit D 25.5

Vit B12 210 (190 - 900)

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OK, I know that this is obvious to you but your results are nowhere near optimal and in 2 cases under the reference range and this makes another result questionable.

Ferritin 22 (15 - 150) Within range but as per SeasideSusie's many replies on this topic, Hashimoto's patients find that a level of 70 is approx. what they need, so you have a long way to go.

Folate 2.8 (4.6 - 18.7) Clearly below the reference range and strongly suggests folate deficiency or even folate anaemia. Are you being treated for this?

Vit D 25.5 You are 0.5 above the level of severe deficiency and well below the level at which you need loading dosages of vitamin D to rectify this level. Are you receiving treatment for this?

Vit B12 210 (190 - 900) You can see that you have tottered across the floor of this reference range. My difficulty is that if you are confirmed as folate deficient or folate anaemic, then there is such an interdependency between folate and B12 that this raises ??? about your B12 level. The best way of dealing with this is for your GP to investigate whether you have a B12 deficiency problem to rule this out *before* prescribing folic acid supplements for you.

We need to know if you're already taking supplements to address these levels and, if so, how much you've been taking and for how long.

ETA: Please take a look at SeasideSusie's response to someone with levels like yours as it will tell you what interventions you need from your GP: healthunlocked.com/thyroidu...

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Thanks I take folic acid 5mg started 2016 and ferrous fumarate 210mg once a day for anaemia since 2014 and 800iu vit D started 2014

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Unless there's an obvious reason that we don't know about, it's disappointing that your GP hasn't initiated an escalation of your treatment to explore why supplementation is not working for you so far.

If there isn't an obvious reason as to why your GP thinks this is OK, you need a referral to understand why your iron status is so unimpressive after nearly 3 years of supplementation.

Ditto, why are you still clearly documenting folate deficiency/anaemia in your blood tests after supplementing for a year? Was your B12 investigated before initiating the folic acid?

And, finally - 800IU is the *maintenance* dose for someone who has been deficient in vitamin D and *whose level has been brought up to the correct level*. You have been taking vitamin D for 3 years and I doubt that your level has improved. You need loading doses as detailed in Seaside Susie's reply that I linked.

Please, make notes of the guidelines that Seaside Susie quotes, book and appointment with the most competent GP in your practice and go and discuss the lack of progress with your vitamin and mineral results. Unless there is an over-riding reason that explains your levels, request the appropriate treatment and ask for the referrals to explore why you're not improving.

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B12 never investigated before starting folic acid. Will make an appointment with GP

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Please let us know how you get on at the appointment and *only* make an appointment with the most competent GP in the practice.

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Your GP should have investigated the 'intrinsic factor' before supplementing B12 to confirm or not whether you have Pernicious Anaemia. Another autoimmune condition and I believe taking folic acid could affect any test at present negatively.

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Tsh wants to be around 1. I felt terrible at 3. Yours is at 6.

The tsh is the brain signal shouting at the thyroid to get working harder as you don’t have enough thyroid hormone in circulation.

When you have enough hormone the shouting calms down and the tsh signal should get to around 1.

Your ft4 and ft3 and in the bottom 1/3 of the range. You want them both to be in the top 1/3.

You have antibodies as well. Has hashimotoes been mentioned?

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Never been mentioned thanks

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How DARE this endo says this to you!

They are insinuating that you are a hypochondriac......You are not !

They might use a fancy term such as "has somatic symptoms"........ These are not symptoms which are manifested in your mind, they are REAL and your blood test results testify this.

The others above had said what you need to do now. More levo and observation to see if you are converting to T3 ok and mineral/vitamin tests to see if you need help in that department (most of us Hashis do).

Sack the Endo off.

Grrrrr.........I need a lie down now. We are on your side here, you have come to the right place for help and guidence.

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Pity your endo is not suffering the symptoms of Hypothyroidcthen they might sing a different tune

YOU ARE RIGHT ...THEY ARE WRONG

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Dear Ana10

I’m so sorry you have been treated like this. You will get better with the good people on this site. The Endo is so very wrong. Take care of yourself. Jane x

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Your endo's medical qualifications are all in his head and should retire! Jeezs I am speechless! Almost....

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In your head his anatomy is way off it’s in your neck

Shop around for a better gp and don’t be fobbed off

My doctor told me I was over thinking things which I thought really rude my symptoms and results were not so different from yourself I’m under 1 on tsh now and feel a lot better marz is a great help and seaside is brill for supplements it’s took me nearly a year. Keep going back until someone listens.it really pays to be assertive and research everything you can.you take care

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Unfortunately "stress , depressed , all in your head " are classic responses from Gp and consultants . It's repeated so often that you start thinking maybe it's true . I have battled with my doctors surgery for years to raise my thyroxine , vit d . A new gp arrives looks at my blood test and says your Tsh levels are normal but your T4 levels are low ...increases thyroxine and is monitoring my vit d . Now 2 weeks later I can already feel a difference ....and that's definitely not "all in my head " !!!

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So how does your head produce obviously hypo blood results with over range TSH and rock bottom Free T4 and free T3? Does he think you are Derren Brown and able to hypnotise the labs into seeing hypo results? You are obviously undermedicated. Find an endo with a clue (and some degree of politeness) ask louise.roberts@thyroiduk.org for the list of better doctors and endos and see if there is one in your area (Yours is a plonker!), and also ask for a copy of the Dr Toft Pulse article that explains about TSH needing to be below 1 or even suppressed so that Free T4 is at the top of, or even over, the range.

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So sorry that you, like so many of us, have had to deal with yet another idiot endo. They seem totally disinterested in learning about Hashimoto's. There are over 2 million people in UK on Levothyroxine. That's an awful lot of people they are potentially messing about

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

With Hashimoto's, until it's under control, (TSH under one) our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working.

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

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...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Importance of magnesium

hypothyroidmom.com/two-vita...

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 article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.

Email Louise at a Thyroid UK for list of recommended thyroid specialists louise.roberts@thyroiduk.org.uk

So make an appointment at GP's and ask for 25mcgs Levo dose increase. Retest after 6-8 weeks.

All thyroid tests should be done as early as possible in morning and fasting and if taking Levo don't take it in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

Following SeasideSusie detailed vitamin advice, asking GP for full and proper testing & treatment for very low ferritin and B12

See this similar post

healthunlocked.com/thyroidu...

When you start taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

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Hi there,

Im sorry your doctors are not investigating for the "root cause" of your issues.

If you have been taking iron for an extended period of time and the level isnt increasing, well thats a problem.

Your thyroid will not work properly without adequate iron levels. The first question to ask yourself is, why isnt iron level increasing.

H pylori? H pylori can be present with little to no symptoms. My only stomach symptom was lack of appetite.

I was only tested for h pylori after demanding it, since i had taken b12 tablets for 30 months with no symptom improvement. In fact i felt way worse.

H pylori reduces stomach acid which causes malabsorbtion of iron and b12 and who knows what else as my D was originally at 20 and only improved to 39 after taking 5000iu of ADK (vitamins A, D, and K) for 16 months. It improve to 70 once i started taking magnesium. You would think a doctor would tell their patients this info but they dont.

Your body has 3 to 10 years of b12 stored so this vitamin takes longer to deplete than iron. Your b12 is on the floor. Your thyroid also doesnt work without adequate b12.

Check your labs for your WBC count. Mine was high but still in range for 3 years and not one doctor blinked an eye to mention, hey maybe you have a chronic infection.

Doctors are useless because they dont know how poorly we feel.

If wbc high, demand testing for h pylori, sibo, celiac, Crohns, ect because something is in there causing malabsorbtion. If you can fix the root problem then our bodies can "miraculously" start working properly again and you will need to monitor your thyroid medications carefully as you may not need as high a dose as your thyroid starts to function properly on its own. And a roller coaster ride from hypo to hyper is not fun.

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Joining this fantastic community is probably the best thing you have done in many a year .... I have learnt more in the past few months from the very helpful people on here who know FAR more than any Endocrinologist I have ever seen in my 15 year history since diagnosis - I was in a real health crisis a few months ago but am now recovering NO thanks to my GP or the Endocrinologists but EVERY thanks to everyone on here. Good luck - keep the faith and you will feel better ....

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Symptons r not in head. They r real. I have been sick with hypothyroid /graves disease. I also have high blood pressure as that goes with graves. I have never felt healthy even on the meds. When i first got diagnosed i was six weeks away from death . i meant hyperthyroid..

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