Thyroid UK
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Help please

I feel at a loss. I feel fat, ugly, stupid and like I have no meaning. I lost my appetite, stomach feeling bloated and heavy. Aching in joints. Concentration gone. Tired but wired. Feeling cold.

Endo reluctant to increase dose saying my current results don't mean anything in isolation. Feel like I'm going mad, that my symptoms are in my head and I'll never get better.

Any ideas about what to do appreciated, thank you

20 December 2017 - 175mcg levo diagnosed hypothyroid 2011

TSH 6.9 mIU/L (0.2 - 4.2)

FT4 14.1 pmol/L (12.0 - 22.0)

FT3 3.3 pmol/L (3.10 - 6.80)

TPO antibodies 277 IU/mL (<34)

32 Replies
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Your endo doesn’t deserve to call himself/herself an endo. You are very clearly undermedicated. My best guess is that your “endo” is actually a diabetes specialist who knows nothing about the thyroid. :(

You need a raise in dose. Is your GP sympathetic at all? Would he/she be willing to increase your dosage?

I wouldn’t be surprised if you were also B12, Vit D and ferritin deficient (often the case when undertreated). Go to your GP and ask for them all to be tested and for an increase in levothyroxine.

If your GP won’t listen, ask for a second opinion.

I’m so sorry this is happening to you. It seems to be an increasingly common occurrence. :(

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Hi the GP I have been speaking to is a locum taking over from my usual GP. She asked me if I was trying for a baby. I said yes, she said based on that she would keep my dose as it is and repeat thyroid in 6-8 weeks. She said if I said no she wouldn't retest. She told me she has hypothyroidism too and that the TSH for pregnancy is about 2.5.

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The TSH for pregnancy should be *under* 2.5. You won’t get pregnant with a TSH of 6.9 and on the off chance you do, you’re extremely likely to miscarry. It sounds like the doctor knows nothing about her own condition!!

Don’t be put off. See another doctor and ask for an increase in levothyroxine. Your TSH is far too high, your FT3 far too low (it should be much further up its lab ref range).

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Hi JazzW,

A pleasure to read your expert analysis and your piercing summation of this woefully useless endorsed. It's a crime that such people should be in charge!

Poppy

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Try one of the natural dissociated medications may work better

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You're not going mad, your Endo is the one who needs his head examining. Did you ask him what he meant when he said, current results don't mean anything in isolation ?

If he thinks your results don't mean anything in isolation then he should string them all together and explain them to you so that you can make decisions based on understanding your historical results. If he can't be bothered to take the time to work with you and explain things then he's not worth the money the NHS pay him.

TSH 6.9 mIU/L (0.2 - 4.2) This shows you are undermedicated. Your TSH is above the top of the laboratory range. The top of the range is 4.2. Most people don't feel well until their TSH is around 1 or a little lower. If your TSH was 0.1 it would still be within range so you have plenty of room to increase your medication.

FT4 14.1 pmol/L (12.0 - 22.0) Your FT4 is low. It's best in the top third of the range. If you increase your thyroid medication it's likely to rise which would be good. You need enough T4 so that your body can convert it to T3. It's the T3 that changes the way we feel. We need enough T3 for our body to function properly. Your heart and brain need plenty of T3 available.

FT3 3.3 pmol/L (3.10 - 6.80) Your FT3 is low, in fact it's right near the bottom of the laboratory range and will be causing you symptoms. This evidences that you are undermedicated and need to increase your dose of levothyrxoine. FT3 needs to be in the top third of the range.

TPO antibodies 277 IU/mL (<34) Your antibodies are elevated showing that you have autoimmune thyroid disease otherwise known as Hashimotos thyroiditis. You can read more about Hashimotos on Thyroid UK's website. thyroiduk.org.uk/tuk/about_...

175mcg is quite a reasonable dose of levothyroxine so unless you are very large, it's possible you have some absorption issues. Are you taking your levothyrxoine correctly on an empty stomach with a glass of water and not eating or drinking anything for an hour? Are you leaving at least 4 hours before taking other medicines?

Hashimotos causes gut dysfunction and you may not be absorping vitamins efficiently no matter how good your nutrition andd diet are. Ask your GP to test ferritin, folate, B12 and vitamin D.

Contact your Endo via his secretary and ask for an immediate dose increase. Say that NHS Choices recommended organisation have explained your blood test results to you and they show you are currently undermedicated and you need an immediate dose increase of 25mcg and then retest bloods in 6 weeks time and increase the dose again and so on until your TSH is 1 or lower.

If you have problems getting in touch with your ENdo or he is uncooperative then visit your GP, explain the problem and ask for a dose increase. Normally the Endo's advice supersedes the GP's but as your Endo is so unhelpful andd dosen't seem to know what he is doing I would just work with your GP if you've got a useful one.

Lots of people on this forum have found Endo's useless. Most are diabetic specialists and know diddly squat about thyroid hormones, autoimmune conditions, gut dysfunction and vitamins all of which are essential to improve symptoms with thryoid health conditions.

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I didn't ask endo what he meant. I take levo on an empty stomach with a glass of water and leave 1 hour before food. I take no other medications

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I expect he's one of those Endos who thinks it's ok to keep patients hypothyroid because he's scared of low TSH. A low TSH is not a problem so long as FT3 is still in the lab range.

Recently, Dr Toft released this document which shows how the NHS system of going on TSH alone is not adequate and that many people need FT4 slightly over-range to achieve a good enough FT3 level to be symptom free.

Professor Toft - Counterblast to Thyroid Guidelines

rcpe.ac.uk/sites/default/fi...

You're taking levothyroxine correctly so check out your vitamin levels. When you've got them, post them here as doctors often say all is fine when anywhere in lab range but if you're bumping along the bottom of the NHS range you won't feel well. You need all to be mid-range and B12 near the top of the range.

All the vitamins work togehter with thyroid hormone for efficiency.

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Is 2 weeks recent for vitamin and mineral levels?

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yes.

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Vitamin D total 29.9 (25 - 50 deficiency supplementation is indicated)

Folate 1.6 (2.5 - 19.5)

Vitamin B12 198 (180 - 900)

Ferritin 15 (15 - 150)

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Are you in the UK? If so there are guidelines your GP should follow and as your vitamin D is under 30 your GP should 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...

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)."

Email dionne.fulcher @thyroiduk.org if you would like a copy of the Pulse article to show your GP. If your GP still refuses to increase dose see other GPs at the practice or change practice.

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I am in uk. I have symptoms of B12 deficiency.

Iron 4.7 (6 - 26)

transferrin 11 (12 - 45)

MCV 77.5 (80 - 98)

MCHC 379 (310 - 350)

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Yes, you have iron deficiency anaemia and you need to ask for a referral to a haematologist. Your GP should refer you. Take a list of your B12 deficiency symptoms along when you see your GP and tell him/her the symptoms you've got. Get an urgent appointment to see your GP and ask to be treated according to guidelines for all of your deficiencies. Also, ask for immediate increase in levothyroxine as it's most likely your low thyroid hormone levels have and are contributing to your vitamin deficiency.

Hypothyroidism decreases stomach acid which means you cannot absorp vitamins from food efficiently. You need to correct low thyroid hormone levels to assist better vitamins absorption.

As you have Hashimotos, you would likely benefit from going gluten free. It has to be total. SlowDragon has links and good advice on improving gut function for Hashimotos.

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Forgot to add, I am petite so no, not large at all

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Ok, well there is a possibility that your ENdo is in the camp of believing that thyroid meds are some kind of weight control device. Some believe that patients want their meds increased to lose weight - stupid assumption - but we've had quite a few people on this forum who's Endo said they wouldn't increase their dose because they were too thin!!!

As you've got joint pain it's likely you're low in vitamin D.

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You could be describing me Katsun

You are not going mad....hold on to that thought!

The advice offered here is excellent and is now helping me slowly make progress...without it I would not have known where to start. Change will take time so don't expect a quick fix!

Follow advice here, read related posts and responses. quote/show Prof Toft's work to your GP, take notes and lists of questions to appt, ask to have vit and min tests carried out as advised (the results may surprise you)...self educate then persist, persist persist!

Wishing you Good luck and better days.

Best...

DD

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Thanks already received good advice about vitamin levels

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T3 is very low and the T4/T3-ratio shows that T3 is low in relation to T3 which indicate that T3 really is low.

You need T3 as we all do as synthetic thyroxine (levothyroxine) don't give us normal amounts of T3.

T3 makes us stop wondering if we are stupid (which we are NOT).

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Been refused T3 by endo. Thanks for reply

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If you do as advised about getting the vitamins and correct doses then your body will be much better an converting your T4 to T3. Just adding T3 without correcting the underlying problem in my opinion doesn't give the same stability. It can be done as I've done it myself but it can take time depending how quickly your levels rise.

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Yes I agree. Have started taking magnesium selenium zinc and vit D. and have noticed a good improvement overall. There is no magic pill. Keep positive. There is great help on forums like this. We will get there😊

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You most definitely need a new dr. And don’t think only endocrinologist treat Thyroid it could be a good experienced internal medicine dr. (In my extensive experience with endocrinologists they’re not great at treating thyroid disorders) you need someone who cares. Your TSH is way to high and you’re experiencing hypothyroid symptoms. You’d probably do better on Synthroid rather than levothyroxine. It’s more expensive but in my experience (over 25years) it’s more stable than generic levothyroxine. So sorry you’re going through this but I’ve been there many times and as soon as you get proper dose of Synthroid you’ll feel so much improvement! Good luck!

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In the UK LilyAce we don’t get the option of choosing an internist I’m afraid. I don’t think we have synthroid here either but we do have several brands of levothyroxine to try. The main issue here, as you say, is simply not being prescribed enough of the stuff, which has led to secondary problems with vitamin and mineral levels.

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Dear, I am so sorry. It's understandable 4 some of us. It sucks feeling like that.

What worked for me :

When I added calcium I noticed I'm getting less bloated , and feel lighter, looking more slender.

Helped with brain impairment 2 I think.

Mood fish oils from Point of Return may help with joint pain.

Adding folic acid helped. Suppose to work well with b12?

Magnesium helps too.

Probiotics

Vitamin D

U can look at my posts.

U should get better !

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You should not add calcium unless you actually have a proven calcium deficiency shown in blood tests. It can potentially line arteries and cause problems I believe.

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

Low vitamin levels affect Thyroid hormone 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

Ask GP for coeliac blood test first, if not been done already

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-...

healthunlocked.com/thyroidu...

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 articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

However as patients we have learnt it's essential to get vitamins optimal FIRST, plus must find strictly gluten free diet helps or is essential too

Getting Levo dose high enough to bring TSH down to around one and FT4 towards top of range and FT3 at least half way in range too

Typical posts with Low vitamins due to under medication and detailed advice on supplements from our vitamin guru SeasideSusie

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Low vitamins causing low TSH high FT4 and low FT4

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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What on earth is this meant to mean?? "current results don't mean anything in isolation"

Can your Endo not see that your TSH and FT3 are both out of range?!

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I`m sorry you feel so low, I don`t suffer from a thyroid condition but I do get bad depression due to my injury to my back. I`m not qualified to give you advice, i`m trying to find my old GP Dr B. Mcdonogh to try and help my daughter i`m in Northern Ireland and she lives in Horsham West Sussex. Many years ago as in 34 years I was told my back problem was in my head, wrong I had slipped discs. Try and see your GP if possible, it does get better i`m living proof take care.

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I Went to the doctor in Oct 2014 because i was feeling tired. My b12 was 169. And vit D was 20. I started supplimenting with 220 mcg of b12 and 5000 iu of vit D daily. By Nov 2015 i felt worse so i started exercising only to feel even worse. My feet and knees started aching like i had arthritis so i took chondroitin, which are huge pills. Kept getting worse. I went to a different doctor and my b12 was 242 and d was 39. She told me to keep taking the pills. What i wouldnt give to have started reseaching on my own right then.

I continued the pills and started losing my balance, contentration, memory, got anxiety and extreme exshaution!!!

I started b12 injections in May 2017 and felt better but not well and was finally tested and was positive for h pylori in Aug 2017. I did antibiotic treatment and was still h pylori positive in Nov 2017. I took different antibiotic treatment until Dec 2017. It took two weeks after treatment was finished before i began to feel better and was able to start going for walks again.

When you gave h pylori it reduces the acid in your stomach. Definitely effects absorbtion of b12 and iron. I would say it effects even more nutrients, the more colonized your stomach is.

I had considered that i had dementia as i felt i had lost 50 points of IQ.

Please get tested for h pylori asap if only to rule it out.

My story is much more long and drawn out including consistant lower 1/3 of t3 range but suffice it to say for last 6 months I was taking a multivitamin, B12 injections, magnesium, vitamin D, Brazil nuts for selenium, zinc, vitamin C, you name it I was taking it and I still feel like crap crap and more crap until I got rid of H pylori.

Your thyroid doesnt work properly without adequate nutition and if your stomach doesn't have the acid it needs to break down the supplements that you are swallowing, you will not get the nutrition you need.

You are asking for help from your doctor. You are telling her you feel bad. This is their fault for being willfully ignorant at this piint. A good doctor would have done some research into your symptoms in an effort to be able to help! I had lost my appetite and yet was gaining weight. I seriously doubt any of this is in yiur head. Please get tested.

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Hi Kat,

So sorry to hear how clearly unwell you are. There are brilliant people here who will help you without a doubt.

What I pick up on in your post is the bloating and abdominal discomfort. The extreme fatigue and joint pain. And the feeling 'fat'.

You have probably missed a whole load of other observations because it all too much...

The 'fat' could be because you might have adrenal fatigue? High cortisol puts weight on us around our middle... Seen from behind you may not appear as large as you are from the front...your arms and legs will not correspond to how 'fat' you may feel around the middle- possible indication of high cortisol.

Also, poor gut health, inferior numbers of the right probiotic strains in our gut will cause problems. Inflammation, swollen abdomen, inability to digest food properly, feeling nauseous, even loss of appetite.

With a poorly populated gut biome housing bad bacteria as opposed to good ones will cause serious problems.

Our endocrine issues are not 'linear' like beads on a string. We are a complex organism and when things goes wrong with our immune system, illnesses such as Thyroid issues are not easy to isolate as so many other threads are involved. It's a multifaceted issue.

Inflammation is the body's defence when under attack. Hence our joints ache and hurt and everything else that goes with it. However, when the immune system malfunctions and inflammation present when there is no reason 'to defend'... Treating this symptom alone does not solve the issue. We need to dig deeper.

Given the fact that our first line of defence is our immune system we need to go back to source and try and fix it. 80% of our immune system is in fact it seems housed in the gut.

Therefore logically, if we help to improve our gut, we stand a chance of diminishing the inflammation, thereby improving aching joints etc...

As the Ancient Greek philosopher Hippocrates said over 2,000 years ago, with nothing more than logic and observation, "all disease starts in the gut".

So how to improve our gut health, is it possible??

Yes it is.

Daily consumption of Kefir, be it dairy based or coconut water based will provide you with billions of live probiotic cultures that will reseed you gut biome.

As I am cow dairy intolerant, I make coconut water Kefir. It is a revelation. The benefits are endless.

I am also taking a month's course of Flucanazole to combat Candida albicans.

In three months I have gone down by 3 holes on my belt. I am not on a diet. It is the Kefir repopulating my gut biome, replacing the bad bugs such as Candida.

I forget the exact stats, but Candida can weigh an enormous amount in the body accounting for a large swollen abdomen which to the those that do not know will appear as 'fat' when we are not!

Clearly you have a lot going on. There is no single pill that will make it all better- it's so much more complicated that that.

Attempt to repair your gut. Make your own Kefir. Once your gut improves it will uptake more vitamins from your food...

Keep all your required vitamin uptake robust, don't let borderline blood test results interpreted by your GP tell you that 'you are fine'. Aim for the upper end of the guidelines.

Avoid sulphites...

Sodium monosulphite a preservative is even used on shrimp. It gets used in Prosecco, red wines and balsamic.

Organic wine production and organic balsamic vinegar does not include the harmful sulphites, but because of this the producers expect to have much higher corkage levels and thus make losses. Big commercial entities to avoid corkage loss use these nasty sulphites thus keeping costs down and making maximum profit.

By reading what you have written I can tell that you are not ugly! You may laugh at me for saying so, but I know that you are not! You are a sensitive, expressive and open person who has asked for help, this makes you beautiful. You are simply in a difficult place on this journey at this moment in time as you deal with this condition.

Our world is becoming ever more challenged and poisoned with chemicals and pesticides. Endocrine issues are an epidemic. You are not alone. You have come to the right place for help.

One of the first steps us to help reseed you gut biome. Kefir will help.

I have spare activated kefir grains if you would like some. I can email you full instructions.

Take Care,

Poppy the 🐈

X

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You need to go back to your GP and ask him to investigate WHY your iron and vitamins are chronically low. There is possibly/likely a problem with your gut as others have mentioned.

Take a look at Coeliac UK website - low iron is a key symptom in having Coeliac - you have low levels of everything and you need an explanation for them. Bloating is also a symptom. Not everyone with Coeliac has bowel problems or sudden weight loss so Drs don't always pick it up. Coeliac UK will give you advice on how to get tested. (Do not go gluten free until you have asked your Dr)

Good luck finding out what is going on

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