Hi I am new

[Demitri]

I feel embarrassed to come here but here goes...I was diagnosed hypothyroid 5 years ago, current symptoms are affecting my functioning every day. Hard stool more than once every day, tiredness, hair falling out, pale and dry skin all over face and legs, feeling the cold, periods draining the life out of me and making me feel dizzy, breathlessness, pins and needles in feet and fingers. I have been told I must be a vegetarian because of how pale I look. Sorry for ramble. Thanks

[Clutter]

Welcome to the forum, Demitri.

It sounds as though you may be undermedicated and may, perhaps, have some vitamin and mineral deficiencies.

If you post your recent thyroid results and ranges and any results and ranges you have for ferritin, vitamin D, B12 and folate we'll tell you whether you are optimally dosed and whether you need to supplement.

[Demitri in reply to Clutter]

TSH 5.3 mIU/L (0.27 - 4.20)

Free T4 13.7 pmol/L (12 - 22)

Ferritin 44 ug/L (30 - 400)

Folate 2.1 ug/L (2.5 - 19.5)

Vitamin B12 235 pg/L (190 - 900)

Vitamin D total 34.8 nmol/L (25 - 50 vitamin D deficiency. Supplementation is indicated)

Taking 1 ferrous fumarate a day and 800iu D3 once a day, receiving B12 injections, I think I need to be on more vit D3 though?

[shaws Administrator in reply to Demitri]

You are on an insufficient dose of levothyroxine. Your TSH should be 1 or below. Your FT4 should be nearer the upper part of the range and because this is very low I am assuming your Free T3 will be too.

T4 is inactive (a prohormone) and it has to convert to T3. T3 is the only Active Hormone and it is required in our millions of T3 receptor cells otherwise we cannot function, as your symptoms show, i.e. breathlessness etc.

We have to read, learn and ask questions in order to recover as doctors and endocrinologists seem to be unaware of how best to treat us.

Your blood tests have to be at the very earliest from now on, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take it afterwards. This helps keep the TSH at its highest) and yours is certainly too high as it should be around 1 or lower. With FT4 and FT3 towards the upper part of the ranges.

I shall add in SeasideSusie re your very low vits/minerals.

[Clutter in reply to Demitri]

Demitri,

You are undermedicated to have TSH 5.3 while taking Levothyroxine. Ask your GP to increase dose. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.27 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

B12 is low so it looks like you are due another injection. The pins and needles you have in feet and fingers are typical signs of B12 deficiency. Other signs are b12deficiency.info/signs-an... Ask for your B12 injection ASAP.

Folate is deficient. My GP prescribed 5mg folic acid for a couple of months to raise folate. Folate works with B12 so make sure you get a prescription but you may want to wait until 48 hours after the B12 injection before taking it.

healthunlocked.com/pasoc are the experts on pernicious anaemia, B12 and folate deficiency. Pop over to speak to them if you need more advice.

800iu is insufficient for deficiency. It is supposed to be prescribed as a maintenance dose when deficiency is replete >75. . Your GP should refer to local guidelines or the NICE CKS recommendations for treating vita-min D deficient adults cks.nice.org.uk/vitamin-d-d...

Taking 1,000mg vitamin C with Ferrous Fumarate will aid absorption and minimise constipation.

Make sure you take vitD and iron 4 hours away from Levothyroxine.

[SeasideSusie Remembering]

Demitri

No need to feel embarrassed. We're all in the same boat, we don't know each other, we just try and help each other out.

What are your latest test results? Can you please post them with their reference ranges (ranges are very important as they differ from lab to lab).

Have you had thyroid antibodies tested, are they raised?

Have you had vitamins and minerals tested - Vit D, B12, Folate and Ferritin - please post results and ranges and say if you are supplementing.

Say what dose of thyroid meds you are on, and tell us if the dose has been changed over time and why. We can only help if we have all the information.

[Demitri in reply to SeasideSusie]

TSH 5.3 mIU/L (0.27 - 4.20)

Free T4 13.7 pmol/L (12 - 22)

Ferritin 44 ug/L (30 - 400)

Folate 2.1 ug/L (2.5 - 19.5)

Vitamin B12 235 pg/L (190 - 900)

Vitamin D total 34.8 nmol/L (25 - 50 vitamin D deficiency. Supplementation is indicated)

Taking 1 ferrous fumarate a day and 800iu D3 once a day, receiving B12 injections, I think I need to be on more vit D3 though?

Taking 50mcg levothyroxine and I reduced it from 150mcg back in August.

[shaws Administrator in reply to Demitri]

Why did you reduce your dose of levothyroxine?

[Demitri in reply to shaws]

Endo said I should.

[SeasideSusie Remembering in reply to Demitri]

Demitri

Did you reduce your dose yourself or were you told by your GP to reduce it.

You are now very undermedicated. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo. You need a dose increase of 25mcg immediately, followed by retesting in 6 weeks time with another increase of 25mcg, then repeat every 6 weeks until your levels are where they need to be for you to feel well.

Ferritin 44 ug/L (30 - 400) 1 ferrous fumarate a day

For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

Did you have an iron panel and full blood count? Low ferritin can suggest iron deficiency anaemia and it would be best to test if not already done.

**

Folate 2.1 ug/L (2.5 - 19.5)

Vitamin B12 235 pg/L (190 - 900) receiving B12 injections

What about your folate deficiency? Are you prescribed folic acid?

**

Vitamin D total 34.8 nmol/L 800iu D3 once a day

You definitely do need more than 800iu daily but with your level you probably wont be prescribed any more now. My suggestion is to take 10,000iu daily for 4 weeks then reduce to 5000iu daily and retest in 3 months time. If you do not have Hashi's then you can use softgels such as bodykind.com/product/2463-b... but if you do have Hashi's you'd be better off using an oral spray for better absorption, eg BetterYou.

Once you've reached the level recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

**

Have you had thyroid antibodies tested?

[Demitri in reply to SeasideSusie]

I was told by another GP I can have loading dose of vitamin D. Endo told me I should reduce dose of levothyroxine.

Thyroid peroxidase antibody 338 IU/mL (<34)

I have iron deficiency. Not prescribed folic acid

[SeasideSusie Remembering in reply to Demitri]

OK, then make sure the loading doses are in accordance with NICE treatment summary for Vit D deficiency:

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

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Once the loading doses have been completed, don't bother with the 800iu daily you will be given, follow the suggestion above until you reach 100-150nmol/L then find your maintenance dose and as you have Hashi's then I suggest you buy the BetterYou D3 spray.

[SeasideSusie Remembering in reply to Demitri]

Demitri

Iron deficiency should be treated - see NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):

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

How should I treat iron deficiency anaemia?

•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

•Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

◦Do not wait for investigations to be carried out before prescribing iron supplements.

•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

• Monitor the person to ensure that there is an adequate response to iron treatment.

Ask why you haven't been given the correct treatment and make sure your prescription is increased. Take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

Also point out that as your folate result is below range then you are folate deficient and need folic acid prescribing. Again, ask why this has been ignored.

If it's your GP who has ignored all these things then I would see a different one, if it's your endo then I would ditch him as he's useless.

[Hidden in reply to Demitri]

Did you go straight from 150 mcg daily to 50 mcg?! In that case, incredible...you are supposed to lower dose by 25 mcg at a time (some even decrease it by as little as 12.5 mcg, that is, half a 25 mcg pill) at a time...you cannot decrease your levo dose by 100 mcg in one go or you risk ending up taking too little...which is obviously what has happened to you, hence all your symptoms of being under medicated and thus hypothyroid. 50 mcg is a starting dose for most people, BTW.

[Demitri in reply to Hidden]

Yes asked to reduce from 150mcg to 50mcg thanks

[TSH110 in reply to Demitri]

Demitri you poor thing it is not good for the heart either to have huge variations in dosage like that - small wonder you feel ill and what The heck has vegetarianism got to do with it? Lazy, ill informed and incompetent medicine is all too common sadly with this disorder.

Good job we have thyroid uk to help redress the worst of it.

[Demitri in reply to SeasideSusie]

August 2017 results on 150mcg levothyroxine

TSH 0.03 mIU/L (0.2 - 4.2)

Free T4 20.5 pmol/L (12 - 22)

January 2017 results on 175mcg levothyroxine

TSH 1.65 mIU/L (0.2 - 4.2)

Free T4 16.2 pmol/L (12 - 22)

Free T3 4.2 pmol/L (3.1 - 6.8)

Thyroid peroxidase antibody 338 IU/mL (<34)

November 2016 results on 175mcg levothyroxine

TSH 3.80 mIU/L (0.2 - 4.2)

Free T4 17.3 pmol/L (12 - 22)

Free T3 4.1 pmol/L (3.1 - 6.8)

[SeasideSusie Remembering in reply to Demitri]

Demitri

Why was your dose reduced after your January results? With a TSH of 1.65, FT4 less than half way through range and FT3 low in range, there was no need for a reduction, in fact you should have had an increase with those results.

Also, there's nothing wrong with your August results either that warranted a dose reduction, your FT4 was in range, your FT3 should have been tested, and TSH doesn't matter because it is a pituitary hormone not a thyroid hormone and will be low when taking replacement thyroid hormone at a decent dose.

I think your endo is a diabetes specialist who doesn't know how to treat hypothyroidism.

**

Thyroid peroxidase antibody 338 IU/mL (<34)

Here is a big part of your problem. Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. You have low nutrients and this will be because of the Hashi's. For the absorption problem, please check out SlowDragon 's reply to this post which contains links and information which will help healthunlocked.com/thyroidu...

[Demitri in reply to SeasideSusie]

GP said if I stay on the same dose or increase to any more I will end up overmedicated.

[SeasideSusie Remembering in reply to Demitri]

Demitri

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

> Treatment Options

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor. However, I don't know if this is in the current edition as it has been reprinted a few times.

Also -

Dr Toft 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 [e-mail] print it and highlight question 6 to show your doctor then ask for an increase in dose based on that information.

[Angel_of_the_North in reply to Demitri]

GP is an idiot and doesn't care whther you feel well or not. If you end up overmedicated the symptoms will be obvious and you can reduce by 25mcg when that happens: IF it happens

[TSH110 in reply to Demitri]

Demitri utter claptrap 🙄

[SlowDragon Administrator]

Your results in January did NOT show you were over medicated.

Your GP should not have reduced your dose.

You are now extremely under medicated, low vitamin levels and high antibodies confirm you have Hashimoto's

Many/most medics don't understand or ignore the antibodies. But to feel better we must address it

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

Low vitamin levels stop Thyroid hormone working

Blood tests then suggest you are over medicated but remain very hypothyroid

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-...

healthunlocked.com/thyroidu...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

[LaShell]

I too am hypothyroid and have the same problem (hard stools), my endo. has me taking 400mg. of magnesium (chewables) every day along with a 250mg. stool softener (Docusate). This seems to work very well for me. I take a Vitamin D chewable (2000 IU) daily as well, and have found that drinking a lot of water makes a big difference in how I feel.