Thyroid UK

I feel like giving up

No matter what I do I never feel or get any better. Diagnosed hypothyroid 6 years ago. Current dose 100mcg levo. Symptoms below

Bloating and trapped wind especially when on periods

Heavy periods

Tiredness

Muscle twitches

Flaky skin

Splitting nails

Tinnitus

Joint pain

Cracked lips and heels

Dry eyes

Headaches

Depression

Memory loss

Loss of concentration

Dizziness

Low heart rate

Pins and needles in feet

Toes going white and numb

Neck swollen

Ankles and legs swollen

Pains in backs of legs

Advice welcome, thank you

December 2017 (100mcg levo)

Serum TSH 7.01 mIU/L (0.2 - 4.2)

Serum Free T4 14.4 pmol/L (12.0 - 22.0)

Serum Free T3 3.3 pmol/L (3.10 - 6.80)

42 Replies
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Well, I imagine you're under-medicated and have nutritional deficiencies, judging by that list of symptoms. But, you'll have to give us a bit more detail. Do you have a copy of your latest labs?

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Added as soon as I realised I did not include labs, thank you

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You are extremely under-medicated. So, not surprising you're not getting any better. Your TSH should be down to 1 or under, and your Frees up near the top of the range.

Your high antibodies mean you have Hashi's - aka Autoimmune thyroiditis. Your endo either didn't know, or was afraid you'd ask questions that he couldn't answer.

Hashi's is an autoimmune disease, where the immun system attacks the thyroid and slowly destroys it, leaving you more and more hypo. There is no cure for Hashi's, but you can help yourself by adopting a 100% gluten-free diet, and taking selenium, to lower the antibodies. It would also help if you could get your TSH down to zero. But, you're going to need several increases in dose before that happens.

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Also

Thyroid Peroxidase antibodies 871 IU/mL (<34)

Thyroglobulin antibodies 258.4 IU/mL (<115)

Endo wouldn't tell me what these meant

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Strange, what do you mean he wouldn't tell you what they mean??

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I asked him what they meant and he said he didn't know and then went on to look at the thyroid levels

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That doesn't inspire much confidence does it? And what did he say about your undermedicated results?

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Report him to GMC and your Health Authority. If he didn't know then he is not a qualified Endocrinologist and shouldn't be in the job.

He should be investigated.

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This doesn't really make sense tania. If he didn't know what they are - or what results mean - then why would he test them in the first place?

Had the knowledge to do the tests ??? Strange.

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I'm not sure what it is I've done, sorry

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You’ve done nothing wrong - Nanaedake was referring to your doctor!

Your doctor is rubbish - that’s your main problem. You’re very undermedicated - you need a raise in levo. Is there another doctor you can see? You also need your Vit B12, Vit D and ferritin testing as they’re all likely to be low and contributing to how ill you feel.

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I have results of these

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Dec

Ferritin 22 (15 - 150) iron stopped 2016

Folate 2.2 (2.5 - 19.5)

Vitamin D 33.5

Vitamin B12 195 (180 - 900)

Waiting on B12 injections for 5 months

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Waiting on b12 injections for 5 montgs ...everyone of your doctors needs shooting they are a disgrace

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Please try to see a different doctor, you need help to get better xxxx

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What else is being done about these deficiencies / insufficiencies?

Ask him to phone Haematology and arrange for you be be seen there straight away . Or go and see your GP.

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Tania - do you have an appointment date for your first B12 injection as it should be immediate?

Were you told that you will receive one injection per month for 5 months?

Will you be retested then ?

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You haven't done anything wrong. Your doctor should have increased your dose. He should have told you that you were undermedicated.

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Feel so muddled with what to supplement :(

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See your GP or phone or call in to Haematology department with ALL your results. Ask Haematology how you go about getting treated NOW.

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You are extremely under medicated

Dose needs increasing in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Make urgent appointment with your GP and ask for 25mcgs dose increase

Retesting 6-8 weeks after each dose increase

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

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

Low vitamin levels affect Thyroid hormone working

Your vitamins are terrible because of Hashimoto's and because you are under medicated

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...

thyroidpharmacist.com/artic...

Vitamin advice in detail on supplements from SeasideSusie here

healthunlocked.com/thyroidu...

It's essential to get vitamins optimal

Gluten free diet will help too

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...

But with Hashimoto's we need to get vitamins optimal first, Levo dose increased enough to lower TSH to around one and FT4 towards top of range

Strictly gluten free diet likely to help or be essential

Then, if FT3 remains low, like many others with Hashimoto's you may need small addition of T3

But other steps must be taken first

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You cannot say she is extremely under medicated! There’s plenty of expert opinion that too much levo is counterproductive (negative feedback effects on peripheral conversion rates to T3). Averages and normal ranges are just an indication, many people have normal set points that are different to other people’s normal. Much more comprehensive blood profiles over a longer period are needed to Discover homeostasic condition and optimum hormone replacement.

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Hashihouseman but efforts should be made to get the TSH under 1 using increases in Levothyroxine in 25mcg increases every 6 week’s, not leave it at a massive 7.

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With those symptoms?

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Having that list of miserable symptoms, over a period of 6 years, is a comprehensive indication of being under-medicated. Whether it’s insufficient T4, or the lack of T3 or NDT is truly an individual case. There is nothing “normal” about that list of symptoms.

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Hashihouseman, well post some links to prove a TSH above range is fine for younger people who are taking Levothyroxine and have autoimmune thyroid disease and are symptomatic. People are individual and if not symptomatic then fine but otherwise ii symptomatic increasing dose has worked for many here.

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With frees like that and over range TSH, she is extremely undermedicated. Shown by blood tests QED. Not helped of course, by dreadful vitamin and ferritin levels, and probably poor absorption. I bet you work for the NHS.

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Hashihouseman -

The poster's Pituitary Gland is overworking in producing too much TSH. TSH needs to be brought much lower. FT3 FT4 need mproving.

NB:

Look at her symptoms !!

The poster is very unwell.

Nutrients also in need of immediate medical attention and adequate prescribing - she shouldn't have to deal with this .

She is the unwell patient . THEY are the Doctors !!

Her Pituitary Gland needs protecting. She needs ADEQUATE Thyroxine synthetic replacement to become stable.

Regular dose can be up to 200mcg - read the patient leaflet.

" . . . houseman " are you Doctor?

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Are you a doctor? So what either way , my point is that without comprehensive trending blood profiles over a reasonably long period how can anyone be sure what anybody's homeostatic thyroid status is? Yes there's a lot of circumstantial evidence we can all provide but doesn't it need to be taken in the round with unequivocal biological monitoring? Isn't that objective science, no more no less? I am not a doctor but I am a scientist and health professional and have direct experience of the symptoms of autoimmune thyroiditis, and of various treatment modalities and their effects on blood levels over time. Among other things thyroid blood profiles are surely best interpreted with accurate information of time of last medication, time of day in relation to circadian fluctuations, of TSH in particular, and how long the preceding hormone replacement regime had been in effect since the last blood test ? Yes yes there's much we can all do to optimise co-factor well being (vitamins, minerals, general health, acknowledgement of any other confounding conditions etc.) when hypothyroid but isn't the absolute number one issue is hormone replacement and conversion efficiency leading to whatever blood levels provide best symptom response and most stable blood levels at the same time of day and the same distance between medication doses and blood draw? As to what the dose of Levothyroxine could be, based on patient information leaflets and prescribing guidelines, isn't the only way to determine it reliably by titrated dose responses shown in blood profile results? It is stated in the research and academic text that excess T4 exerts negative feedback on conversion to T3 and that some people have genetic polymorphisms or perhaps selenium deficiencies that render the T4-T3 conversion less efficient than others. I suggest these as examples of why some scientific papers Suggest that intra-personal variation is much more significant than inter-personal variation. And therefore, that stability in doses and blood profiles and symptoms is much more important than whether these levels and doses are similar to the average or yours or mine. Or, perhaps to put it another way; if replacement is inadequate the trend will be falling blood levels of free and total T4 and T3 and rising TSH , if excess then the trend will be rising hormone levels and falling or significantly suppressed TSH , whereas at optimum the blood levels will be steady over time with TSH varying perhaps around I-3 points at a level the individual associates with well being , probably around I-5 if the averages of healthy and treated individuals from large scale combined studies are anything to go by?.....

And look, this is all said on the basis of my experience, research review and scientific opinion, for the sake of open minded discussion not as some egocentric pontification. Surely we are all here to learn and consider dffering points of view?

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Swap some levo for some desiccated. Trial and error. Maybe 3/4 grain armour thyroid instead of 25mcg levo... ... be mindful of time of blood test in relation to last dose of medication and circadian rythyms (which can affect tsh by between 1-3 units, midday midnight)

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Well if you live in the UK that's not necessarily an option unless you can afford it.

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Your TSH is 7.01 no wonder you do not feel well ...what the B hell is your GP playing at ?

Correctly treated

TSH should be 1.0 or below

Freet4 should be around 19

Freet3 should be around 5.5

What are your levels of

Ferritin

Folate

B12

Vit d3

They are vital too as without all 4 being at least halfway in their ranges the body cannot convert the inactive t4 in levo into the active T3 that every single cell needs to function

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Hi Tania07

Do listen to the advice. I’m a relative newbie here - but I can vouch for excellent advice and info on this forum.

Once you get to the right level of medication (which may take some time) - I’m sure you will see an improvement in your symptoms and start feeling a lot better.

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You want to get better- listen to the advice given here from people who have been there and others still going through it-ignore the idiots that are so called docs or endos and bite the bullett and take charge of your health, it is hard and it is overwhelmimg with all the knowledge that is given to you here on this forum and you may think oh god another test to arrange or more vits and minerals to buy, but it is your health and no bloody gp gives a flying ..... sorry my rant over!! Be kind to yourself.xxx

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Hi tania07

so sorry to hear your Dr's have left you struggling like this. It probably feels terribly over-whelming at this point in time. Thankfully, you have this forum. Believe it, you can be well and the folk on here, as you can probably tell, care passionately because we have all been there and want to help others who are in the same boat.

Keep updating the forum and ask more questions if you're confused about something, as everyone will want to hear how you have got on and continue to support you :-)

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And the same battle goes on and on with so called medical professionals. I'm sorry for you. You're in the right place here. Fire any Dr or endo that goes by TSH only. Take your health into your own hands. They are killing you.

Take care

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Josie

We'd have to fire every GP in Wales !

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Here too. 😊

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You are way under medicated! I'm so sorry, I know it's frustrating to be that exhausted. My Endo wants my tsh between 1 and 2. 7 is very high, no wonder you feel awful. I follow gluten free/dairy free diet, which is helpful. I also take b12,iron and vitamin D but I honestly did not start feeling better until I went to an integrative endocrinologist and she prescribed T3 along with my Synthroid. I take it 2 times a day along. there was only so much i could do with diet and vitamins. I had to find an endocrinologist out of my network. Where are you located? Are you able to choose your doctor? A lot of doctors in the states only want to treat you with Synthroid, if your levels are perfect it doesn't matter if you feel awful, which was my case. I hope you can get the help you need.

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bmcpsychiatry.biomedcentral...

1. Raise levo to 125 mcg so that your TSH dropls to 2.5 at most. 2.You may need some T3 too. 3. Study the factors affecting TSH: thyroid-info.com/articles/t...

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Excellent advice offered here by very knowledgeable people.

However, I can understand feeling like "a rabbit in front of the headlights". It's perfectly normal to feel like your head is in a spin.

The advice about going gluten free is very very important. It's something you can do for yourself. It will give you both control and make you feel better.

Going gluten free will protect you from the substances that will cause you harm.

The reason they cause us harm is because we have a damaged gut. It is described as leaky because it is in fact perforated. The gluten toxins pass through our gut wall directly into our blood stream which provokes in itself an autoimmune response which keeps adding more and more problems to our already faltering immune system.

You can do a lot to help repair a leaky gut. Avoid where possible antibiotics.

And take your own brewed coconut water Kefir (non cow dairy) which will contain billions and billions of live gut healing probiotics.

If you want to learn what you need and how to brew your own Kefir, private message me. You will not look back!

Best Wishes,

Poppy the Cat

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I read a really good book that helped me find the right balance of Meds. Book is Tired Thyroid. I suggest you visit the website too. Her advice is sound and it works! I was on 75 mcg Tirosint for 2 years and felt awful. Doc agreed to put me on NatureThroid, but I became T4 depleted and felt like I aged 20 years in 3 months! I had my doctor supplement the NatureThroid with Tirosint and I feel like I did when I was in my 30/40s. I went from 75 mcg Tirosint only to 3/4 grain NatureThroid and 50 mcg Tirosint. Loved how I felt! But doc said TSH was too low and NatureThroid is backordered so now I’m on 75 mcg Tirosint agin, Plus 5 Cytomel. I must admit I feel pretty good. I hope my story helped. Don’t give up!

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